Please note the list below contains proposals that have been peer-reviewed and accepted for presentation at Medicine X 2016.
This is a preliminary listing, more abstracts will be added as they are accepted.
Therefore, the list below does not necessarily reflect the final presentation list. A final presenter list and schedule will be published at a later date.
Business Presentations (34)
Resuscitating pediatric emergency care; balancing psychology, innovation and technology
Pediatric out-of-hospital cardiac arrest survival has remained at 6% since the 1980s. The abysmal statistic, reported by the American Heart Association as recently as 2015, is due to false assumptions that have been ingrained in the medical community for over three decades. In this presentation Dr. Antevy will describe the psychological basis of pediatric resuscitation and will describe the fatal flaw in the current system. He will describe the innovations that ultimately formed Pediatric Emergency Standards, Inc., a bootstrapped startup which combines behavioral economics, technology and mobile integration. With success measured in lives saved, the pediatric resuscitation system Antevy created is now being used in 29 States and be several renowned health care systems across the country.
Securing the internet of health care – effective strategies for medical device security
The modern clinical ecosystem has become dependent upon a complex environment of medical devices, from the simplest consumer glucose meters to the largest imaging devices. The interactions of patients and clinicians, and the sharing of data among devices, is crucial for accurate diagnoses and effective outcomes. However, medical devices typically have the worst relative security profile, and this fact is too often overlooked. Medical devices have the most vulnerabilities of any hardware, IT or otherwise, functioning within the hospital. Most health care security experts agree that medical device security vulnerabilities have reached the tipping point at which the risk to integrity of data is becoming eclipsed by the compromise of patient safety.
Given the criticality of data sharing and analysis from this Internet of Healthcare, what can be done to address medical device security issues without creating obstacles to patient care? In this presentation we will:
- Discuss how to identify and target the devices with the most critical security vulnerabilities – from those in use by consumers to those within hospital settings.
- Learn how to address these issues through a layered risk management approach of IT security best practices and vendor analysis that creates checkpoints for patients, clinicians and IT staff.
- How to maintain innovation in development of medical devices and applications while adhering to security best practices.
Heal: A clinical care startup’s growth story
Nick Desai, CEO of Heal, will discuss the maturation of the doctor-on-demand startup from beta to a roster of 3000 patient visits as of early 2016. Learn how Heal evolved from a cash-only business model to partnering with health insurance companies and major corporations to offer doctor visits for the cost of a co-pay. The discussion will feature Heal’s analysis of its own data to determine that house calls are a successful means of saving health care dollars and improving health outcomes.
The rapid adoption and evolution of liquid biopsy technology in oncology diagnostics
The pace of adoption of liquid biopsy by the U.S. oncology community has few peers in the history of cancer care. This rapid adoption has sparked a wave of investment and interest in similar technology from large biotechnology companies, venture capitalists, and numerous startups.
Liquid biopsies were originally introduced as a tool to help match advanced cancer patients with an appropriate targeted therapy, while sparing them the discomfort and risk of an invasive tissue biopsy. But the greater promise lies in the ability of a blood test to surveil for cancer and assuage the concerns of high-risk populations, whether they have inherited cancer risks, environmental exposures, or are cancer survivors.
As genomic sequencing costs drop, technology improves, and test sensitivity increases, new applications will emerge.
In this session Guardant Health CEO Helmy Eltoukhy will discuss:
- The rapidly evolving liquid biopsy commercial landscape
- The potential for new applications beyond what has already been commercialized today
- The process of building and iterating a digital-molecular product in a regulated environment
Using a communication tool that improves workflow efficiency and enhances secure collaboration increases patient safety.
Baton is a digital communications platform designed to improve patient safety and increase care provider productivity. Created in the field at Johns Hopkins Hospital, Baton enhances an existing workflow by integrating HIPAA compliant text messages, shared task lists, photo albums, and electronic summary sheets into a single platform.
Using ACGME guidelines as its design standard, Baton improves care team workflow to establish a more efficient clinical environment. For example, Baton enables:
- Secure multimedia individual and team messaging
- Task list completion tracking and analysis
- Real-time updates to patient status and health information
- Optional integration with the EMR
- Inter-professional collaboration
- Patient and family input into the patient’s condition
- Standardization of the patient handoff
- Oversight of the clinical learning environment
- Access from any computer or mobile device
In order to directly address the needs of the care team and facilitate adoption, Baton is modular based. This key feature enables care teams to customize Baton to meet their specific needs, and activate or deactivate features without affecting their current workflow. At the most basic level, a care team might use Baton for simple correspondences. For instance, in the following example:
Resident: “John Davis was seen in the ER with deep burns to his right hand.”
(This note might be accompanied by a series of secure images of the patient’s injury.)
Attending: “Admit Mr. Davis, I will be there in 45 minutes.”
As an example of a more advanced use of Baton, the Attending meets with the Chief Resident, and after reviewing each patient on the service, assigns tasks to members of the care team, including deadlines for completion. Later in the day, the Attending generates a report analyzing the care team’s performance on task completion. To improve compliance with handoff best practices, the Attending can use Baton to refine the existing workflow to improve patient care and reduce the likelihood of preventable errors.
Other features of Baton include filtering and sorting of patients based upon keywords, care-team-defined patient categories for structured (formal) and unstructured (informal) data, the ability to allow patients and their families to review and input information in a restricted section of Baton, and standardized record keeping for reporting adverse events.
The Economics of Diagnostics: Disrupting the Health Care Industry Through Near Patient Testing
Cary Gunn, PhD
The current laboratory testing system is broken and costly. It sends patients to off-site collection sites, and then transports their samples in fleets of economy cars and cargo jets to large central laboratories for testing which takes days or weeks to generate results. This delays medical decisions and adds significant additional costs to physicians, patients and the health care industry as a whole. The industry is long overdue for change.
The past six months have brought intense scrutiny of the diagnostics world from industry leaders, investors and media alike. This has led many to question the ability of the diagnostics industry to make the necessary changes and transform the way in which we operate. It is imperative in this time of great upheaval, that we look at successful, innovative models in diagnostics as proof positive our system is ready for great change.
For too long diagnostics have played a tangential role in the patient experience by being absent from that critical time when a physician and patient are in consultation. Centralized laboratory testing virtually ensures that a physician will not be able to interpret test results contemporaneously with an exam. Instead, when he/she finally receives test results the doctor is forced to interpret them in the context of an exam that happened days or weeks ago. And the results still have to be communicated to the patient by phone or in a follow up appointment. All of these delays are not only costly, but negatively impact quality of care and patient satisfaction.
Genalyte’s approach brings diagnostics into the physician office, allowing for point-of-care testing that delivers results in under 15 minutes. Genalyte can embed itself in the health care system and digitize blood samples from a finger-stick. Then it harnesses the massive efficiency of cloud technology for data analysis, quality control, and communication.
Near-patient testing presents a $75 billion opportunity for our industry. A single specialty such as rheumatology alone presents a $1 billion opportunity, highlighting the myriad specialties within health care where this approach can be implemented.
Genalyte’s business model and proprietary technology will improve the patient experience as well as bring significant savings to the health care system as a whole.
- Machines are placed directly in clinics eliminating the need to send patients off-site or to transport samples saving millions of dollars on transportation alone.
- Results are generated and communicated to the physician within 15 minutes allowing test results to be interpreted with the patient present for examination allowing earlier intervention and improved outcomes.
- Patients will leave an appointment with their test results eliminating the need for costly follow up appointments or unreimbursed phone calls.
- Genalyte owns the testing platform, operates the lab and oversees billing so there is no cost to the clinic.
Proprietary technology must be thoroughly vetted for the sake of the patient as well as the physician. Health care is not an industry that you can disrupt by breaking things and going back to remedy them later on. There are no do-overs. You must lead with fundamentally sound, proven technology.
As evidenced by the growing scrutiny on verifiable results, the watchwords for companies transforming diagnostics must be “scientific rigor.” The science backing this change must be the highest priority; anything short of that will disrupt the disruptors and hinder needed improvements to health care that can mean a better quality of life for patients around the world.
The vision of our approach is simple: in an age when information can be transmitted at the speed of light, it makes no sense to maintain a diagnostics system that involves patients traveling to far-flung labs and then waiting days or weeks for results. Rapid test results that provide physicians and patients with the confidence to make data-driven treatment decisions during a patient’s initial visit should – and will – become the new standard of care.
Online strategies for managing chronic illness in China
Mark Heitner, MD, MBA
1. Doctors are under siege. Doctors may see 100-200 patients/day. They are known to supplement their meager income by ordering unnecessary tests and medicines.
2. Our research showed that patients often wait hours in lengthy queues for a cursory consultation that they do not understand. Health literacy is low. Violence against doctors is all too common.
China faces multiple medical catastrophes:
- 114 million have diabetes
- 493 million have prediabetes
- 267 million have hypertension
- 150 million have major depression
- 27% of global cancer deaths are in China
Decaying dietary and lifestyle habits (68% of Chinese men smoke) have exacerbated these crises.
3. A strategy of empowering patients through a nutrition intervention is well suited to China. The link between food and health is embedded in traditional Chinese culture, where food choices are seen as healing or disruptive to health. Patients desire to reduce or stop usage of medicine in order to restore ‘balance’ to their health, while food is considered the ideal healing method.
Patients often ask doctors “tell me what to eat to control my illness”. Unfortunately doctors do not have the time or knowledge needed to address nutrition questions and there is a dearth of dieticians.
4. Over half of Chinese own smartphones, which makes it feasible to use digital applications to collect and deliver nutrition data and advice.
WeChat, China’s app-of-apps, combines the features of Facebook, Twitter, Skype and Instagram. WeChat’s 570 million daily active users message friends, play games, book travel, post their photos, and read news.
5. Zhi Hui (Healing Wisdom) Intelligent Therapeutics is a Shanghai-based personalized medicine company. Zhi Hui’s app provides patients with personalized nutrition plans. These plans are generated from machine learning, using lifestyle and laboratory data collected from the app and in collaboration with hospital data.
6. From Insight to Feature
Insight 1 – Food planning is a family event, not an individual effort.
Feature 1 – Our algorithms provide meal plans for multiple family members (our current focus is on metabolic syndrome).
Insight 2 – Patients won’t input their nutrition data without receiving something of immediate value in return.
Feature 2 – The apps’s home page is driven by an advanced gamification and health feedback engine that provides personalized feedback to the patient.
Insight 3 – Patients sorely lack reliable information on chronic disease. Their adult children want to identify helpful articles on chronic illness so they may share them, via WeChat, with their parents.
Feature 3 – Our app contains a knowledge center consisting of articles written or curated by professional nutritionists and doctors. These articles are shareable via WeChat.
Insight 4 – 150 million suffer from untreated major depression.
Feature 4 – We have integrated mental health education and depression screening tools into the app.
Revolutionizing the flow of data to improve every patient’s care
Jim Hollingshead, PhD
Digital health cannot succeed if siloed systems impede the flow of data. As the global leader in connected health devices, ResMed has a unique understanding of what it takes to connect the health care world. ResMed has built its success in the space through its history in understanding and creating therapies designed to improve chronic respiratory conditions, including sleep apnea and COPD. As the first to commercialize CPAP therapy for sleep-disordered breathing, ResMed has been revolutionizing care delivery and medical devices for decades. Looking forward, it looks to revolutionize how best to learn from patients as to how and why they are using prescribed devices.
In this talk, Jim Hollingshead will discuss how ResMed has evolved from a medical device manufacturer to the global leader in connected care with more than 1.3M connected health devices today, and how, in the process, the company has singlehandedly built a scalable infrastructure to diagnose, treat and monitor tens of millions of patients with life-threatening conditions, and what that means for patients, payers, providers, and the future of medicine.
The renaissance of patient education in the age of social media
Our modern-day ability to exchange large amounts of information quickly and efficiently, through online platforms like social media, stands in stark contrast to the capacity of health care providers to share critical information with patients. This issue is best exemplified by the paper-based patient education that inexplicably continues to serve as the primary didactic tool in most clinics worldwide.
Historically, two main factors contributed to the knowledge sharing gap in health care: (1) lack of an intuitive and efficient information-delivery technology and; (2) the expense of creating didactic materials for patients. Whether causative or mutually exclusive, the vague US regulatory requirements, which simultaneously mandates the use of technology (HITECH Act) while insisting on highly misunderstood privacy regulations (HIPAA), further exacerbates these issues. Expecting busy health care providers to navigate this complex environment with the currently available tools is misguided.
As a result, health care is failing to provide an experience that mirrors the convenience and effectiveness of other knowledge-sharing services within information-heavy industries – services that have fundamentally altered huge segments of the economy and have seamlessly been integrated into our lives. This is not only a missed opportunity to improve user (read: patient) experience – it is literally a life-threatening rift in the provider-patient relationship.
With careful consideration of UI, UX and security, a standalone technology prototype was designed to specifically address patient education. This service was subsequently tested in 21 health care practices and amongst 57,000 patients in multiple locations across the United States. Patient education was limited to three specific, semi-elective surgical procedures. Prior to study commencement, these practices utilized face-to-face discussion and paper handouts as the primary educational tool (as none had knowledge or access to any applicable technology). At various points after implementation, patients (n=~32,000) and health care providers were rigorously surveyed. Patients reported significant satisfaction rates (≥98%), improved preparedness for procedures and/or follow up appointments (≥96%), and a high desire for repeat-usage (≥92%). Practices experienced improved utilization of clinical and ancillary staff members, and subsequent decrease in overhead costs related to patient education and communication. Additionally, clinic staff reported increased trust in the capability of technology to support patients with asynchronous education (≥95%). Overall, the prototype demonstrated the value in augmenting current treatment protocols with appropriate and thoughtful digital education solutions.
This presentation will review the history and evolution of patient education over the past three decades; discuss and differentiate between patient education versus engagement; clarify HIPAA and HITECH Act misconceptions (as they relate to this subject); and challenge current methodologies of patient education and engagement, demonstrating currently available strategies to substantially strengthen this experience.
The opportunities and challenges of connecting 1 million health care professionals around the world
Joshua Landy, MD
Deep in the Peruvian rainforest, a single physician looks after a farming settlement just shy of two thousand people. There are no other health care professionals around; hospitals are expensive and far. But he is not alone. By using Figure 1, a secure digital platform for discussing and sharing medical cases, this physician is able to consult colleagues and specialists around the world.
With more than 1 million users, WIRED magazine calls Figure 1 “the central nervous system of global health.” The platform is connecting health care professionals around the world, allowing them to share their clinical knowledge on a global scale – and helping save lives. Example: A 22-hour-old infant in Haiti presents with pustules over the scalp and shoulder. The registered nurse overseeing the infant’s care has no access to laboratory testing and is concerned about the safety of 12 other infants sharing the same room. She shares the case on Figure 1, asking for help. Suggestions come within minutes and don’t stop for days. In the end, 16,000 health care professionals sprang into action to help attend to one sick child. Paging cases such as this, where Figure 1 users can upload a case and “page” relevant specialists for feedback, are typically responded to within three hours by a verified specialist. This is faster than many hospitals.
Healthcare professionals from almost every specialty connect on Figure 1 to help assess challenging cases, learn from differences in practice, and marvel at medicine in its many idiosyncratic forms. The platform reports more than 50,000 active users daily. While many users have helped improve outcomes for global cases, advancements are also being made on a local scale. American hospitals with large-scale clinical practices are using Figure 1 to share their expertise by virtually walking through interesting cases. What was typically restricted to one cohort of residents (and perhaps a few top-of-mind colleagues) is now easily shared.
As the Figure 1 community continues to grow and begins localizing in other markets, its co-founders are making constant adjustments to their strategy to sustain the quality of the clinical knowledge made available on the platform. This presentation will be led by Figure 1 co-founder, Dr. Joshua Landy. He will discuss how network effects apply to global medicine, the barriers to innovation and how to work around them, and what the future holds for connected health care.
Human-augmented machine intelligence to eliminate preventable hospitalization
Lance Myers, PhD
Chronic disease management is one of the biggest health care problems facing the United States today. It is believed that many hospitalizations for chronic disease are avoidable. Specifically COPD, CHF and diabetes are considered ambulatory sensitive conditions, meaning that improved care could reduce unnecessary hospitalizations and emergency department visits, leading to significant cost savings and improved patient outcomes. However, it has been a challenge to improve chronic disease management because the progressive deterioration in the patients occurs at home, outside the view of their clinicians, and before the patient becomes overtly symptomatic. Episodes of crisis leading to acute deterioration that require emergency and lengthy hospitalization are often preceded by changes in multiple, measurable physiological systems.
The rise of relatively inexpensive remote medical sensor technology combined with powerful computing technology and machine learning offers novel avenues for clinicians to have an early detection system for identifying a decompensating patient. The Sentrian Remote Patient Intelligence technology platform now enables the measurement and detection of health deterioration in advance of acute situations, allowing sufficient time to intervene and reduce the likelihood of hospitalization. Patients are sent a kit of wireless biometric sensors appropriate to their disease state, co-morbidities and other clinical indicators. Patients use the devices against a specific measurement protocol and schedule. Device measurements are uploaded to the cloud where the system examines received longitudinal patient measurements and generates predictions of when a patient may be deteriorating. These early warning events are communicated to care managers and clinicians who can immediately and remotely intervene with safer, lower cost treatment options. These options include medication adjustments, various forms of education and timely appointment scheduling.
Sentrian approaches the prediction problem using advanced, domain specific machine learning techniques. The intelligence in the system is a closed-loop feedback methodology that continually analyzes remote sensor data and adjusts event prediction models to improve detection accuracy over time. The system integrates patient measurement data with actual clinical outcomes and interventions taken and learns which events were missed and which were accurately predicted. It is then able to apply these learnings to reduce false alarms and improve sensitivity in an on-going manner.
Sentrian recognizes the importance of the physician’s experience in detecting patient deterioration, and has taken a novel approach to create a hybrid human augmented-machine learning interface. The system presents data-driven recommendations for updating patient deterioration logic, in a form easily interpreted by a physician, who then approves or edit those recommendations.
The technology is currently being tested in four large scientific trials with thousands of patients, including one of the largest health insurance companies in the U.S. Dr Myers will present the technology and preliminary results from one of the studies that specifically enrolled patients with a primary diagnosis of COPD
How patients take control of their precision cancer care by accessing their own molecular profiling data
Martin Naley, MBA
Advancements in technology and science are making precision medicine more possible every day. However, these innovations remain just out of reach for so many patients. We built a new company based on the hypothesis that regular people, armed with their data, can effectively access treatment options that were otherwise unavailable to them. Cure Forward recently launched for cancer patients, giving them access to their molecular profiling test data from any lab. People can use that data to learn about their disease, participate in a clinical trials exchange, and meet matched patients to problem-solve together.
2016 is the year that we plan to validate our hypothesis. We will be monitoring patient activity on the website: data uploads, posts to the trial exchange, clinical trial matches, and stories where using one’s data changed the course of their care. We will be collecting data to understand the impact we are having on patient’s lives and to improve to make an even bigger difference.
In this presentation, we will share the story of Cure Forward and our progress to-date with hard metrics and activity-based insights. We believe that a movement is underway for citizen science and patient-powered medicine, and we want to contribute our experience to the dialogue.
Empowering Providers to Engage Patients
Despite all the advances introduced into health care over the last 20 years, the biggest X factor in successfully treating patients is still the patients themselves. If the patient is not engaged, then it is unlikely their condition will improve. This is especially true of patients with one or more chronic illnesses, which describes nearly 1 out of 2 adults in the U.S. according to the CDC.
In this presentation, “Empowering Providers to Engage Patients,” Offering Lead for IBM Watson Care Manager, Russell Olsen, will briefly describe the vast need for improving patient engagement, and then discuss the analytics, tools and automation providers need to find and engage the right patients at the right time – on a population scale. At the heart of the problem is the need to make it exponentially simpler for providers to reach out and encourage the sickest patients to take better care of themselves. As Olsen will describe, the key is automating many of the care management tasks that are currently being performed manually by physicians, nurses and/or office staff.
Building on the theme of automation, Olsen will describe how IBM Watson Health’s care management automation technology – used by 1 in 4 of the nation’s largest health systems – has improved patient engagement for large physician groups across the country. One area where IBM Watson Health is making a significant impact is improving the health of patients with chronic diseases. Here are three recent examples:
- Bon Secours Virginia Medical Group (BSVMG) used IBM Watson Health to drive nearly 31,000 extra visits to BSVMG from chronic disease patients with gaps in care during the 12 months ended August 2014. By meeting payer requirements for filling patient care gaps, BSVMG received $2 million in incentive bonuses from their ACO-like commercial contracts while improving the health of those patients. (http://bit.ly/1gogWqk)
- Arch Health Partners in San Diego wanted to raise the percentage of patients whose hypertension is under control from 63% to 70% by the end of a six-month trial period. Instead, using IBM Watson Health, the group achieved 77% control, leading Arch to create a new target of 80% for the next six months (http://bit.ly/18Yc4Lj).
- Northeast Georgia Physicians Group used IBM Watson Health to build a patient cohort, risk-stratify patients, identify care gaps and send automated messages encouraging patients to make and keep appointments and providing digital diabetes education materials. As a result, the physician group was able to help 800 targeted patients lower their HbA1c scores by nearly 50 percent (http://bit.ly/1EUNqao).
Creating movement in health care organizations through patient mobilization
ePatient Sarah Kucharski summed up a core theme of last year’s Medicine X when she chanted, “I command changes in corporate philosophy that facilitate collaboration between pharma and patients. See me, hear me, feel me, and include me. We must find ways to work together. Even though it will not be easy.” We heard it loud and clear: relationships matter—patient-to-patient relationships and relationships between organizations and patients.
We’ve heard, and understand, why patient communities are important to patients. In this talk, we’ll shift the focus to why and how patient communities are helpful for organizations. We’ll dive into the value of patient communities and what patient engagement looks like in practice with examples of initiatives by organizations like Oticon Medical and Eli Lilly.
Today, patients empower themselves by meeting others and finding information online. Less time with doctors and more investment in personal health care drives that desire more than ever. Organizations see the need to play a role in this connection, community and information sharing, but can become paralyzed by process and an unclear understanding of how it helps further business objectives.
As Jack Whelan said, “Business processes that have served this industry are so entrenched throughout that we fail to recognize their shortcomings. It’s no secret this industry has become risk averse, reluctant to change and often gives its business processes priority over science.”
Patients who practice self-disclosure and who have made it their own personal mission to inform others can help organizations overcome that paralysis. Understanding how to engage and create meaningful relationships—and most of all how to mobilize those relationships—can become access to otherwise closed conversations.
For organizations, patient communities serve the purpose of becoming more patient-centric, but these communities can also make a significant business impact. Organizations have the opportunity to connect advocates to patients, which gives organizations the opportunity to empower people to share messages in a much more casual, informal way. People trust other people more than companies, and they want to get as close as possible to understanding what to expect from a product or process. Patient communities help people get there. Listening and observing conversations in patient communities helps companies create content that really moves people through the journey and/or decision process. These conversations take the guessing out of content creation—topics, questions, what will provide value—which is time consuming and costly. Communities act as built in R&D for organizations by helping to inform what’s next.
For example, Oticon Medical, the company pioneering bone anchored hearing implant technology, needed to prioritize a number of new products for development, FDA approval and marketing. By creating a closed community for patient-to-patient discussions, Oticon Medical saw that current bone anchored hearing system users were finding many people who also wanted the device, but had an abutment that wouldn’t allow for use of Oticon Medical’s system. With that patient data in hand, Oticon Medical pushed the release of their abutment extender product. Today, the community has done most of the marketing for the new product, which has greatly increased interest and sales.
We’ll also cover brass tacks, like:
- How to use technology to be a MORE human-centered company
- How and why connection needs context
- Why professionals want patient-centered content too
We’ll dive into a 6-step engagement process that organization can utilize to build and use patient communities to move their organizations into the present and future—with each step showing live examples.
Breaking the medical cartel – patient ordered tests and treatments
Gregory Schmidt, MD
Since time immemorial, a small group of individuals has controlled medical knowledge. Be it the shaman, the medicine man, or the doctor, the practice of medicine has been restricted and secretive. The medical cartel, however, will come to an end this decade.
In this session, I will demonstrate why it is essential that patients be given the ability to order their own investigations and treatments. You are not alone in thinking such a proposal seems ill-conceived and a disaster waiting to happen. However, I will show why this is an essential step towards creating space for the development of new models of health care delivery.
The current system of physician-centered health care evolved to protect patients from nineteenth century quackery. Today patients continue to demand trustworthy care; however, there are new ways to verify authenticity. I will show how the clash between the current medical model and potential future models will only be amplified once home diagnostic tests are more widely available and computer algorithms and machine intelligence has matured.
Many within health care anticipate that new artificial intelligence-aided diagnostic tools will be used only by qualified clinicians. However, this is akin to limiting Google Search to select university professors. In almost every field outside of medicine, access to knowledge and tools for implementation have been democratized and made almost free. Advances in diagnostics and machine learning will help do the same for medicine; but we must create a regulatory environment where this can happen.
In addition to new technologies, one can expect better personal relationships in health care. New ‘para-physician’ fields will emerge. Rather than studying for 15 years to become a physician, new specialists may train for a few years to become qualified in a specific domain – such as hypertension, diabetes, obesity, and lifestyle change. Such providers would cost significantly less than physicians, and provide more effective longitudinal care. The current system prevents such fields from emerging.
This presentation will address many unanswered questions. Where does this leave the physician? How do we help prevent patients from being duped by online scams? Is my headache a brain tumour? Will this system be fragmented and contradictory? Will antibiotic use skyrocket? Who is responsible for following up on test results? Who pays for this?
Explore the potential opportunities and risks that could result from fracturing the physician monopoly over health care and giving patients the ability to order their own tests and treatments.
Bringing a great consumer experience to health care: killing engagement and embracing empowerment
Chronic conditions are highly prevalent today, with about half of all adults – 117 million people in total – having one or more chronic health conditions, and one in every of four adults having two or more chronic conditions. Diabetes, a disease that affects more than 29 million people in the United States, is notorious for the development of co-morbidities and other problems. This creates an extreme threat to health and quality of life for people with diabetes. This is why it is so vital for people to take control of their disease and properly manage it. And, knowing you have to manage a disease simply isn’t enough – people must feel empowered to manage their health.
Unfortunately certain technologies or devices can only add to that frustration and provide more of a burden, which leads to disengaged patients no longer active in care management. Disease management technologies must evolve to be seamless, non-disruptive, and personalized to align with a patient’s lifestyle and goals.
In this insightful MedX talk, Dr. Jennifer Schneider and Dr. Tim Church will discuss why the theory of empowerment with chronic disease is so important and how programs need to map goals to chronic conditions and passively monitor for information, rather than relying on the patient to do more. Dr. Jennifer Schneider and Dr. Tim Church will provide insights on empowering the health care consumer and using new technologies with the consumer in mind to manage chronic conditions:
- Bringing a great consumer experience to health care
- Killing engagement and embracing empowerment: the new model of patient care
- Learning from employer-sponsored care: taking a new approach to diabetes management
- How a great consumer experience yields positive financial and clinical outcomes
- The cost of traditional disease management: why business leaders must approach disease management from a new perspective – one that is designed with the patient in mind
Teaching the business of medicine to future health care leaders
Brad Sutton, MD, MBA
Physicians entering the world of clinical practice, regardless of their specialty or employment situation, must have a basic understanding of the business of health care in order to remain viable as providers. An introduction to specific skills such as leadership, financial management, health care data analytics and modeling are not included in most medical curricula. Understanding the principles that support making good business decisions is increasingly more important to medical learners.
The University of Louisville School of Medicine strives to instruct medical learners across the continuum in the fundamental principles of the business of medicine and leadership necessary to succeed as physicians, physician executives, administrators, and academicians.
Undergraduate students may apply for a Distinction Track in Business and Leadership that, over three years, provides mentorship, didactics, online learning, group projects, and a capstone project. All business distinction track students are enrolled in a mandatory 12-module online course and attend regular didactics and panel discussions. An online leadership curriculum based on Ted Talks™ and a reading list allows asynchronous learning of important business concepts while allowing scheduling flexibility for students. Faculty also benefit as they prepare to teach business content.
Although long-term quantitative data are not yet available, qualitative outcomes such as learner interest and participation, faculty and administrative support, and professional community support have been outstanding. U of L has partnered with Humana, established a new health care think tank (The Center for Health Process Innovation), and several multi-center financial research projects resulting in several national platform presentations. Louisville Lectures™ hosts our online leadership curriculum and we utilize the online course, BeyondtheExamRoom.com™, to supplement education specializing in health care economics and management.
U of L’s model for business education for health care providers provides a replicable model for other institutions to consider. Understanding terms, principles, and best practice in business is necessary for medical learners to be successful in the changing medical landscape and to make good stewards of our collective resources.
Quality of Life as the new metric for evaluating clinical trials
Big pharma has a problem. They have no way to reliably track their patients on clinical trials. They receive most of their data long after it has been collected and often too late to make intelligent business decisions. As a result, one in eight drugs never makes it to market despite the billions poured into clinical trials.
Interestingly, quality of life is becoming an increasingly important metric by which clinical trials are evaluated. In recent years, the FDA has placed more weight on QoL considerations when deciding whether or not to approve or reject a drug. In fact, they are now requiring QoL as a key endpoint for many drug trials. It is evident that the FDA is taking the view that the treatments we develop should help us live longer and better.
Despite the increased focus on how a drug impacts the way a patient continues to live their life, there are no objective ways to measure QoL. Most QoL data are patient-reported, and it’s nearly always collected late in the trial process, at which point the costs of the trial make it literally “too expensive to fail.”
The potential of being able to measure and score quality-of-life variables like lifestyle, activity, diet, and environment is tremendous, especially if we can do it early on in a clinical trial’s lifecycle. For pharma, it means the ability to be more agile in the way they do business. It means the difference between failing fast vs. pouring millions more into a drug that is defined to fail. There is also an impact on the end users of these drugs. Being able to move more quickly in the trials phase results in the development costs of these drugs decreasing and can result in higher-quality treatment and meaningfully improved outcomes.
In this talk, Dr. Sam Volchenboum with discuss how researchers can employ a continuous multi-stream flow of remote patient data to help steward new insights about whether a given trial is promising (or not) as a business by focusing on QoL endpoints in the early phases of the trial. The result, he will argue, is better business decisions in pharma, which the industry desperately needs, as well as more affordable and more impactful drugs that make patients truly better.
Helpsy: an online marketplace and engagement platform for managing chronic conditions
As of 2012, 117 million adults in the US suffered from at least one chronic condition while 60 million adults suffered from at least two chronic conditions. Supportive care therapies such as physical therapy, nutrition, chiropractic, and yoga have been shown to be effective in improving chronic conditions and increasing overall health. It is unsurprising that 38% of Americans spend over $34 billion per year on complementary and alternative medicine (CAM) care to address their health issues. However, few resources currently exist for CAM patients to find effective therapies and trustworthy health experts. As a result, people experiment with multiple therapies and supplement regimens in desperate hope to find something that works. This process can hurt them, and waste time and money.
The Helpsy online platform addresses these issues and provides a reliable and efficient way for sufferers of chronic conditions to find the supportive care modality best suited to treat their chronic condition and to get in contact with the best experts of that care modality. Helpsy was founded in October 2014 by software engineer, oncology nurse, and Ayurveda specialist Sangeeta Agarawal who was inspired to provide a comprehensive and easy-to-use solution for those suffering from chronic conditions. Current online supportive care solutions exist which provide either an online health care plan or access to supportive care practitioners and resources, but none exist which integrates the two in one product. At Helpsy, we are targeting the patients who need our care and the practitioners who can administer it through direct sales channels and through large institutions. At the moment, we are initially focused on the $2 billion out-of-pocket cancer symptom management market made up of over 14 million cancer survivors, 20 million cancer fighters, and over 1000 cancer centers within the US which must implement a cancer survivorship plan due to new Commission on Cancer accreditation requirements.
This talk will introduce the Helpsy online platform and will demonstrate our solution as an easy-to-use and cost-effective way to obtain supportive care for the treatment of chronic conditions.
Standardized patients at scale: how the web is transforming simulation in psychiatry
Jennifer Dore, MD
Simulation has been used extensively in the field of mental health, primarily in a patient-facing context. One example, virtual reality as a tool to augment exposure therapy has been used to help patients manage fears of flying, driving, spiders, social phobia and post-traumatic stress syndrome (Levine, et al). Simulation has also been used to help in the assessment and diagnosis of patients with mental health disorders. A group discovered that patients’ cognitive performance could be assessed using virtual clinicians.
Clinical encounters have typically been simulated through the model of “Simulated Patients”, paid actors who perform a script based on a clinical case. This approach has proven beneficial to trainees: “The process is often described as educational, both with regard to understanding mental health patients and the clinical process.” (Levine, et al).
There are however some limitations that come with the current standardized patient model. For one, portraying patients with mental disorders is considered among the most challenging for these paid actors (Levine, et al). Further, this model exposes trainees to a patient’s condition in a particular moment in time, but does not typically allow them to monitor how the patient might progress based on a treatment or therapy. Finally, there are issues of scale: the availability of talented actors nationwide imposes restrictions on how many and at what frequency standardized patients can be used for training purposes.
A software based simulation model could overcome some of the barriers facing the traditional Standardized Patient approach. The Anyma Clinic is a new, patent-pending technology currently being beta tested at Stanford University School of Medicine and other institutions that aims to revolutionize the mental health education model. Anyma’s simulated virtual patients are accessible via the web and dynamically respond to questions and provider-initiated treatments. Unlike other interview simulations, the Anyma Clinic uses real actors and provides users the ability to “ask anything” through a unique video serving algorithm. User choice is a critical feature in the Anyma Clinic simulation as it helps learners develop their own structure for patient interviews and adjust to unfolding stories and symptoms. Mental health providers can then diagnose and treat their patients by following up with them in subsequent sessions. This allows early stage practitioners to grow more comfortable with the psychiatric assessment and more advanced learners to see rare and challenging cases in a risk free environment. Future features include the ability to assess patients from both a biological and psychological formulation. In this talk, Dr. Dore of The Anyma Clinic will discuss how the technology was developed, and will review potential educational benefits and applications.
The voice of change: building a better field through collaboration and innovation
The Risk Authority Stanford’s book, Inside Looking Up, is a scholarly, practice-based work for leaders in health care and those invested in transformation to begin reconsidering, reassessing, and enhancing traditional risk management practices.
The following case study on a communication and resolution program (CRP) introduces one example of the innovative methodologies explored throughout the book.
A Case of Medical Error
A critically ill child was being monitored on the telemetry unit. The frequency of the sounding alarms prevented the child and his mother from getting any sleep. In a compassionate effort to reduce the noise in the room, the nurse silenced the monitor next to the bed. But, in giving some quiet to the child and his mother, the nurse inadvertently silenced more than the monitor next to the bed, she silenced the alarms on her pager and at the central unit station. When the child experienced a cardiac event, there was no alarm to notify the nurse or any member of the unit care team. The child died.
The Role of CRPs
The organization thoroughly reviewed the circumstances and discovered a safety issue with the monitoring system that could have an impact on other patients. Rather than focusing on the liability risk to the organization, the focus remained on patient safety. The organization alerted all other hospitals using the same monitors of the event in an effort to prevent harm to other patients. Additionally, the organization continued to share information with the child’s family in an effort to express sincere apology and commitment to ensuring such a tragedy did not happen again.
CRPs act on multiple dimensions to improve health systems, address the needs of patients after unexpected outcomes, and enhance the claims management process. The Risk Authority Stanford’s CRP is called PEARL (Process for Early Assessment, Resolution, and Learning) and it is used in Inside Looking Up to demonstrate how CRPs can further innovate and thrive via patient liaisons, peer support programs, and a limited liability model CRP.
PEARL reveals a promising future, conveying improved satisfaction among patients, caregivers, and physicians after unexpected outcomes, as well as improving patient safety to prevent future adverse events. PEARL has been shown to reduce costs without increasing litigation, as demonstrated by the results of a study by an independent actuary. A pre/post analysis of 2003-2008 vs. 2009-2014 shows that after PEARL was implemented, the frequency of lawsuits was 50% lower, indemnity costs in paid cases were 40% lower, and defense costs were 30% lower for cases handled through PEARL.
CRPs like PEARL are one example of emerging risk management strategies explored in Inside Looking Up. It is the intention of this text to offer similar insights on how, through buy-in, collaboration, and dedicated resources, a commitment to innovation can assist managers of risk in building a better playing field that benefits all.
From lawyers to clinicians, to finance strategists, safety engineers, and patient communication specialists, The Risk Authority Stanford team is comprised of individuals that are committed to improving the effectiveness and efficiency of care delivery systems through innovation – and we know that we are not alone.
It’s time to charge forward, together.
Diagnostic testing brought into the home increases Telemedicine usage: The Strep Club
Rob Lapporte, MD
Patients are longing for convenient, high-quality care for low acuity conditions like sore throat, flu and urinary tract infection. Ideally, patients could get diagnosed and treated for such conditions without leaving their homes, for less than the cost of a co-pay. Although the telemedicine explosion has offered a partial solution, most services are rudimentary and lack diagnostic testing, which leads to underutilization of telemedicine, and in-person follow up visits.
Due to decreasing reimbursements and increased demands on medical providers, they too are in the market for an evolution in efficiency of patient care. They need a telemedicine system that allows them to diagnose and treat a patient, document the encounter, and write prescriptions within minutes, while minimizing liability. There is currently no comprehensive system that increases value, by increasing quality, saving time and reducing cost.
What if there was a home-strep test? Or a home flu test?
Just as easy to use as a home-pregnancy test, this one-step test tells you with near certainty whether your sore throat is viral (needing grandma’s chicken soup and perhaps a prescription for comfort measures) or bacterial (requiring antibiotics.) If you do need antibiotics, you don’t need to call your physician and make an apt or go into the ER or urgent care. Simply log in to the website listed on the box, upload a photo of your positive test, and a prescription will be waiting for you at the pharmacy. Still want to talk directly to the board certified physician? Not a problem!! That is always an option, for a small additional fee. But your entire encounter costs less than an average insurance copay.
Forty-five percent of people surveyed said they would trust a virtual diagnosis less, while 29.3 percent said they wouldn’t trust a virtual diagnosis at all. That means approximately 75 percent of people either wouldn’t trust a diagnosis made via telemedicine, or would trust it less than one that was made in-person. This leads to underutilization of telemedicine services.
48% of execs say they are more concerned with convincing doctors about the credibility of the telemedicine. 41% of respondents said they are not reimbursed at all for telemedicine services and 21% are receiving lower rates from managed care companies for telemedicine than in person care.
Lack of reliable physical exam, objective diagnostic testing and credibility lead to under reimbursement. We solve this problem.
5 Principles to Sustainable Behavior Change: A Case Study in Non-Adherence
Jon Michaeli, MBA
Greater social support has been shown to be associated with improved health outcomes and healthier behavior Non-adherence to chronic medications imposes a substantial clinical and financial burden on the US health care system. Research shows that social support using existing friends or family has been associated with greater medication adherence. A recent CVS Health report evaluated 50 peer-reviewed articles, which directly measured the connection between social support systems and medication adherence. There have been many medication reminder interventions aimed simply reminding patients to take their medications in order to increase adherence. In a new approach, Medisafe provides a personalized mHealth platform that uses its social support feature to enhance medication adherence beyond just reminders. This combination seeks to tackle the $290 billion problem of non-adherence by addressing all the major underlying causes of this complex problem, including lack of motivation and support through the app’s Medfriend feature.
The Medfriend feature allows a family member and/or caregiver, to engage in the medication adherence regimen of another user. This allows the Medfriend to assume an important role in supporting patients in managing their medication and health. When a Medisafe user adds and connects with a Medfriend, the designated caregiver receives alerts about missed medication doses and can view the user’s history and schedule. This makes the patient more accountable, encourages positive behavioral changes and helps prevent serious health events that could arise from a missed dose. The Medfriend feature was integral within Medisafe from the beginning, since a double dose of insulin threatened the health of founders Omri and Rotem Shor’s father.
The company released in the end of 2015 the results of a retrospective study demonstrating the positive effect of its Medfriend social support feature on medication adherence. The study showed that 40% of previously non-adherent users (taking their medications less than 80% of the time) became adherent (taking their medications at least 80% of the time) after adding a Medfriend. Medisafe’s study looked at the impact of the Medfriend feature on both adherence and retention:
Group One – Adherence: 1,617 users who were non-adherent before adding a Medfriend and were active two weeks before and after adding a Medfriend. 71% improved adherence after adding a Medfriend (mean=+17% improvement), and 40% became adherent after adding a Medfriend.
Group Two – Retention: 4,000 users with a Medfriend and 4,000 users without a Medfriend, all of whom must have a) installed Medisafe during a two-month period between 5/29/15 and 7/28/15 and b) registered a medication dose at least once. After 90 days on Medisafe, users with a Medfriend were 59% more likely to have remained active.
Our study results indicate that adding social support to a medication adherence intervention can yield positive results.
Changing health professions education one game at a time
Professions Quest is a wholly owned company of the American Association of Colleges of Pharmacy. In 2015 the game Mimycx was launched by Professions Quest for health professions education. The massive multiplayer online game is designed for five players (from any health or allied health profession) to interact and solve problems as a team. The core competencies of communication, ethics, team and team role developed by the Interprofessional Education Collaborative (IPEC) are used as outcomes for defining the activities and assessment of the player. Players must act independently and together to solve problems set in the future. The purpose of the game and the future setting is to help students (and practitioners) learn to work together on teams and to respect and communicate with each other. In addition since the current health care system is in need of change the designers of Mimycx want the students to have every opportunity to think differently about health care and their interactions. It is hoped that students exposed to learning together, outside of the current health system, will be able to envision and make changes for better health and wellness of individuals and populations. The game can be played online 24/7. This provides the opportunity for students to learn from, with and about each other in places all over the world. The game also includes the opportunity to chat and network when not solving problems. Faculty members have a designated portal and can log in to determine the type of quests available and the competencies that students are expected to achieve. Faculty have the option of opening up the game to world wide play or to only allow play within a college or university setting. Faculty have access to the information from the players interaction with others, their behaviors, and their scores. As players level up they have more responsibility for communication and teaching others. There are small mini games incorporated throughout each episode or quest that enable players to gain skills and to think differently as they are solving problems. This game when implemented within or outside of classroom activities provides students the platform needed for learning together. There is no other game that provides this type of 5 member team play with assessment occurring in the background providing instant feedback to students. The future of education and health care will change, and Mimycx is a catalyst for that change.
Fighting addiction with data: How focusing on physician quality and practice patterns can impact America’s opioid epidemic
Opioid use disorder (OUD — the medical term for addiction to opioid substances such as prescription painkillers or heroin) is an increasingly alarming epidemic. Overdoses involving opioids killed 28,647 Americans in 2014, and the rate of opioid overdose has tripled since 2000. Recent studies estimate that 2.4 million Americans meet criteria for OUD and many more use opioids recreationally, putting themselves at significant risk for addiction, overdose, and related morbidities. In addition to its devastating consequences to individuals, OUD is estimated to have a societal cost of $55.7 billion annually.
Although the root causes of America’s opioid epidemic are multifaceted, physician behavior and practice patterns play a significant role. Consider that Americans consume 80% of the global supply of all opioids despite comprising less than 5% of the global population, and the vast majority of these opioids are prescribed.
Once a problem concentrated in America’s urban-poor population, OUD has spread to all corners of American society and currently exerts a significant toll on the middle class and the actively employed population. The demographic shift poses a significant threat to the productivity of the American economy: Opioid usage (by prescription or otherwise) is associated with decreased employment, increased health care utilization, poor workers’ compensation claim outcomes, increased rates of disability, decreased rates of return-to-work following injury, and decreased self-reported ratings of quality of life and overall health.
American employers, insurers, and payers have an opportunity to address the opioid epidemic by influencing patient and physician behaviors. Specifically, by encouraging and rewarding patient visits to high quality physicians who demonstrate responsible opioid prescription patterns. By identifying, rewarding, and spreading the best-practices of high-quality physicians, Grand Rounds promotes primary prevention of the OUD epidemic within the covered populations of our customers and partners. We agree with experts in the field that prioritizing a primary prevention strategy is key to combating the opioid epidemic, especially given the unique features of OUD that make secondary prevention strategies particularly difficult and resource intensive.
Through our unique approach to data analytics and physician quality, Grand Rounds has identified significant regional variation in opioid prescription patterns within specialties. Furthermore, this variation can be predicted by our assessments of physician quality. Focusing specifically on the specialties of pain management, orthopedics, and primary care (the three highest opioid prescribing specialties) we find significant variation in the use of evidence-based, multidisciplinary treatments for chronic pain, which can be predicted by our assessments of physician quality.
Will2Love: Guiding cancer survivors on the journey to sexual wellness
Leslie Schover, PhD
Sexual problems rank among the top unmet needs of cancer survivors. Over 60% (9 million) in the US end up with persistent sexual problems. Half report distress, yet fewer than 20% get professional help. Will2Love offers online help, encouraging partners to work together and singles to date again. Will2Love.com provides news, blogs, webinars, moderated online forums, and resources. It links to responsively designed intervention sites for men and women, offered as self-help subscriptions or in a package with telehealth counseling. The interventions each give information on sexual and fertility side effects across cancer sites, self-help strategies to prevent or overcome specific sexual problems, training in sexual and couple communication skills, advice on finding expert help, video interviews with real patients, and vignettes with actors. Sites were developed with 3 fast-track SBIR/STTR grants from NCI. Published and recently completed trials show their efficacy. A randomized trial (RT) of 186 couples after prostate cancer compared the same sex therapy intervention delivered online or in 3 in-person sessions, with a waitlist control (Schover et al. 2012, Cancer). Both formats significantly improved sexual function/satisfaction in men and partners, with gains maintained at 1-year follow-up. An RT compared our next version to urology care alone in a cancer center’s sexual medicine clinic. Treatment satisfaction improved for all men, but access to the web site did not enhance outcomes, with poor adherence. We revised the site extensively, adding goal-setting and tracking and improving navigation. In a pragmatic trial of 29 men (mean age 61±9, mean time since diagnosis 37 mos.±42) 86% accessed the site vs. 60% in the RT, with 59% viewing it for >30 min. compared to 34% in the RT. Mean time on site increased from 101±81 min. in the RT to 151±250 in the pragmatic trial, with 41% vs. 17% sharing it with a partner. Efficacy data is not yet available but 60% rated the site as helpful in understanding cancer’s impact on sex and 34% used it to make decisions about care or felt it improved their sex life. Phone coaching was optional, but 86% rated it very helpful. An RT of our female intervention randomized 58 women to web site alone or supplemented with 3 counseling sessions (Schover et al. 2013, JNCCN). Survivors of breast or gynecologic cancer completed questionnaires at baseline, posttreatment, and 6-month follow-up. Both groups improved significantly in sexual function/satisfaction, distress, and quality of life, but the counseled group initially had bigger gains on sexual function. Site usage was similar in the 2 groups (149±157 min.), but the counseled group’s usage was mainly during the treatment period. The self-help group continued using it during follow-up. By 6 months, groups’ improvement had equalized. We used this site in a multi-component intervention to prevent sexual problems in women starting aromatase inhibitors for localized breast cancer. Data analysis is ongoing, but at 12 months, only 15% of women gave up partner sex compared to 24% in our survey of a similar, untreated cohort. Scores on sexual function and distress also were far better than in the historical cohort. We will continue outcome studies as we go live with the commercial sites.
Changing the conversation : How shared decision making can transform the physician-patient consult
David Cerino, Kristian Novakovic, Christopher Saigal
Shared decision making (SDM) – the collaboration of patients and physicians to make smarter, more confident treatment decisions – is not a new concept. In fact, decades of research have shown that this approach produces more satisfied patients, better adherence and outcomes, and lower costs. Despite this, SDM has often been tried and abandoned when it has failed reach broader adoption to multiple conditions and specialties. Despite the challenges of the past, we believe that SDM’s time has come. As patients demand more involvement, and providers compete to deliver a better care experience in less time and at lower cost, SDM, when designed and deployed intelligently, offers a sustainable path to meeting these competing imperatives.
WiserCare believes that SDM has failed to catch on because for such an approach to scale, it must provide a two-way flow of insight and value to both patient and physician. Legacy approaches have often focused on simply better educating patients on their options. Rarely do they take stock of patient preferences and goals, and when they do, it is in a low-fidelity way that provides little or no value in a treatment decision. On the other hand, traditional SDM has often left the physician in the dark, with no feedback loop as to the SDM “prep” the patient has done, and how that could impact their decision. Thus, SDM expands the patient’s options and questions, rather focuses them. This means a longer consult (a non-starter today), spent at the surface, with little time for deep exploration and the more confident decisions that result.
WiserCare (WC) is an interactive SDM experience that solves the limitations that past SDM approaches have faced. Patients receive an invitation to use WC from their doc, and complete a thought provoking exercise that elicits their goals and preferences. Using a patented algorithm, WC combines these insights with high quality evidence and patient-specific clinical data to generate a “best fit” ranking that is shared with BOTH patient and doc prior to the consult. The doc can glance at the patient’s one-page profile and in 15 seconds, know what matters most to the patient, and how that matches their treatment options. The patient arrives equipped for deeper discussion.
We are in use at 5 health systems (4 AMCs) with more coming. Our patient adoption rates range from 70-95% (about 4x traditional patient engagement adoption rates), and we have achieved unprecedented, statistically significant improvements in decision quality and patient satisfaction. Consult times have decreased, and physicians are delighted with their improved depth. Most importantly, both docs and patients report that WC transforms their time together, making it at once more meaningful and efficient, and yielding measurably happier, more confident patients. This panel includes WC’s founder, as well as physician users, to reflect on how and why WC works, and how it has changed their practice and outlook.
Engaging the next generation of health care consumers
Michael Ruiz, John Englehart, Graham Gardner, Aaron Martin
Due to the Accountable Care Act (ACA), patients are more discerning in the way they select health care than ever before. In conjunction with this, the continued rise of digital technology is influencing the way patients make health care decisions. This panel will illustrate how large health care systems are adapting to this cultural shift by utilizing digital technology—mobile, social, cloud and analytics—to engage with patients before, during and after care. The audience will be interested to learn actionable strategies for improving the experience of the consumer-driven patient, and generate higher levels of patient engagement within the context of digital technology.
Featuring executives from three of the leading health care organizations across the nation, this panel represents a broad knowledge of business, strategy, innovation, and technology across various sized health care systems. Representing Providence St. Josephs Health, Aaron Martin, executive vice president and chief digital officer, provides a creative, business perspective of a significantly large health care system. Hospital for Special Surgery’s chief marketing officer, John Englehart, will discuss how that perennially top-ranked elective care provider is using digital technology to harness and channel patient affinity to help new consumers to find, trust and choose HSS. Michael Ruiz, vice president and chief digital officer at MedStar Health, will provide thoughtful perspective of integrating business strategy with technology in order to provide a seamless and intuitive experience for the consumer-minded patient. Participants can expect a comprehensive discussion, with the opportunity for Q&A, regarding the exploration of digital technology that is empowering health care consumers to engage with their personal health care.
Will most digital health start-ups go global, or even trans-Atlantic? How should they raise the funds to do so?
Denise Silber, Frank Antwerpes, Michael Seres, Ronan Le Quere
The digital health start-up sector was not very international at the outset. Various factors kept many companies’ perspectives national, whether because health care practices were seen to be too local, or national and international regulations too great a barrier to entry. This has been changing in recent years, as some digital health companies have expanded beyond their borders. We’ve put together a diverse and exciting panel of people experienced with the issues of globalization, to interact with participants.
Here are some of the questions they’ll be addressing:
Is international expansion an exception or part of a rising trend in digital health?
Which services are priority candidates for internationalization?
How are digital health companies raising funds for operations beyond their original borders?
At what stage of their operation should the expansion begin?
The panel will include:
- Denise Silber, an American in Paris, eHealth pioneer, president of Basil Strategies, and founder of Doctors 2.0 & You, the first patient-included international digital health conference in Europe
- Dr. Frank Antwerpes, from Germany, originally a dentist, founder of both DocCheck, Europe’s largest online health professional community and of Guano, European seed-fund and network
- Michael J Seres, from the UK, ePatient, blogger, founder of 11 Health, the award-winning connected health start-up for ostomy care, and Stanford Medicine X entrepreneur in residence
- Ronan Le Quere, from France, managing director of Interaction Healthcare and driving global expansion for the MedicActiV digital clinical case simulation platform.
DIY Disruption: Innovating from Within
Mandira Singh, Matt Holman, Sanjay Shah
Anyone paying attention to the way health care operates knows it’s bad. The industry is starved for innovation. Starting with a conversation around the need for novel approaches to solve health care’s pain points, leaders from the innovation arms of Dignity Health, Cambia Health and athenahealth will discuss how they are creating new pipelines to creative solutions by actively wooing, nurturing, and colliding with the next generation of innovators and startups.
Representing the health system, software vendor, and payer worlds, the companies will discuss:
- The catalyst for launching their internal business development platforms and/or accelerators
- Successful development business models aimed at lowering the high barriers of entry into health care for developers, entrepreneurs, providers, and even patients with great ideas
- The blueprint for fostering innovation from seed idea to implementation
- What it takes to build and run a successful “disruptive” community and innovation pipeline
- What they look for in startups, and how they are currently serving up new Marketplace innovations, apps or value-add services that increase profitability, drive operational efficiencies, and improve quality of care
- What the most-future proof tech infrastructure (e.g., developer portals on API-friendly, open platforms) to support and scale innovation looks like
- Secrets to making the most of DIY Disruption, whether you’re running the largest innovation arm or the smallest startup
This conversation will spark dialogue about how entrepreneurs, students, patients or anyone with a novel approach to fixing what’s broken in health care can partner with large stakeholders for success.
Becoming Whole – Bringing Humanity back to Health through Shared Purpose, Trusted Relationships and Community
This poster explores how integral shared purpose, trusted relationships and community are to shifting health and our relationship with it through real life stories of conscious 21st century leaders.
The concepts of the poster can be applied to our relationship with ourselves as patient and our own responsibilities; it can be applied to the patient/physician relationship; the physician/payer relationship and the patient/payer relationship. It is the cultural engagement aspect which must be in place in the 21st for shifts to occur with a mindset of ownership, openness and willingness to really listen and hear all sides of the health story.
Compassion, science and technology in a Health 3.0 world
Umair Khan, Jeff Rubin, EdD
Virtually everyone in health care is figuring out how to expand their use of the web and mobile technology to offer more personalized, interactive, real-time support for consumers. As the Health 3.0 movement gathers momentum and we continue to see web-based services, digital health apps and devices flooding the market, how do those who manage and pay for health care know what to buy? A recent Harris Poll of 1500 people with insurance revealed what they think would most help them manage their health. Some 47% of those surveyed said that having just one person they could trust to help them with their health care needs would be most helpful, compared to 13% who said they’d want to have more digital/mobile apps to help them make decisions on their own. The poll also found that people are not necessarily using what’s available to them through their employer or health plan, with 43% saying they had not used health-related apps or web-based services within the past 12 months.
This poster will explore the questions being asked by those who pay for health care as they consider how to get to better health outcomes while saving costs. How do we strike the right balance of personal service with web-based services and apps? Where does having a person you trust matter most when making decisions and where can technology assume a greater burden? How do people’s needs and preferences change by their stage in life or by their socioeconomic level? What can we do to build commitment and adoption of new technology tools that we do purchase? As a proactive and on-demand health care concierge for employers, health plans, health systems and consumers, Accolade has a unique perspective from blending highly personal one-to-one relationships together with technology that drives meaningful, early and frequent engagement with the individuals we serve.
Top20medicalschool.com, a curated open access directory of video lectures for the first two years of medical school
James Rutherford, MD
Top20medicalschhol.com is a curated (hand-selected), open access (free) directory of video lectures that cover the first two years of medical school. The video lectures are selected, reviewed, and aggregated by topic and in the format of the USMLE Step One exam. The video lectures can be used to prepare before taking a course, to enhance one’s understanding when studying a topic, or to help review and prepare for the USMLE Step One exam.
Please check back later, more abstracts will be added as they are accepted.
Collaborative health saves lives
Brant Menswar, Alan Schaefer
Theo Menswar’s life was saved as a result of tapping into the collective intelligence of the health community locally and virtually and to the world at large. The only way this happens is when individuals and organizations understand the totality of the collaborative process. The challenge is that currently organizations in every industry including health care are experiencing collaborative insanity. That is the notion that telling people to work together better means that people can actually do it. The metric isn’t just the bottom line. The metric is saving a life.
The proposed workshop is to provide the tactical and behavioral how of the collaborative process through the lens of health care. Specifically, delivered by a collaboration expert and father who spent 263 days in the hospital as his son fought for his life. How do we ensure that information is being shared with all relevant parties? How do we ensure that the left hand knows what the right hand is doing when it comes to multiple doctors and specialists working together to care for a patient? How do we overcome personality differences that impact communication in an already dynamic and volatile workplace? Attendees will learn the “how” of collaboration by learning tactics, strategy and approach to working collaboratively. The workshop will also include diagnostics that help individuals understand their role in creating an environment where everyone has a voice and where individual contribution is maximized in a way that increases productivity while fostering alignment. This impacts both medical practitioners and patients. Participants will be given the opportunity to take the Collaborative Harmony Index collaborative diagnostic to increase their own level of awareness in creating a truly collaborative environment.
Design Presentations (43)
Empathy as a constant: improving college student health by designing in community
At the beginning of our weekly group meeting on Monday, I asked Vallari, “How are you doing?” I silently guessed it was a cold, lack of sleep, or an upset in her personal life. Red eyes, less blinking, and an exhausted posture were a few clues. It turned out to be a cold layered on top of exam pressure, fairly common at this time of year for college students. Six months prior, when the university was in emotional wake of a student’s death, Vallari began to imagine new ways to bring students together to support each other during difficult times. On Friday, she would test her design of a new “social connectedness” activity with her peers. Vallari is a student design researcher in a collaborative effort by Mayo Clinic Center for Innovation (CFI) and Arizona State University (ASU) to improve college student health and success using human-centered design.
Over the past two years, a small team of designers from Mayo Clinic has been embedded on the ASU campus and engaged with over 1500 students in design research and prototyping activities to question, understand, and improve college student health and success. Our efforts have yielded three robust prototypes that are currently being tested in large-scale research studies across campus. At a broader level, the collaboration has also forged a growing sense of shared responsibility in tackling the difficult problems that health care and education collectively face.
In the first half of this talk, we’ll introduce the Mayo Clinic Center for Innovation’s human-centered design methodology and show how it works in our day-to-day lives within the ASU community, highlighting how long-term, social embeddedness enables the short and long-term emotional and cognitive empathy that can fuel effective design.
In the second half of the talk, we’ll present a set of design principles for student health gleaned from constructive and often contentious discussions with our students over the last two years. Then, we’ll extrapolate on the design principle “make data open, interactive and collaborative” through a case study of student data sets, challenging us as designers and researchers to attend to issues of unconscious bias, structural vulnerabilities and the freedom to create and control our own digital identities.
As our small design team co-exists with students during their everyday college experiences, struggles, victories, emotions, defeats, and ideas, empathy ceases to be a design process or skill but occupies its rightful place as a constant in design, honoring all the complexities that each of us carry as we try to improve the health of ourselves, our families and our communities.
When is technology better than a human? Designing for honest disclosure, confidence, and action
While clinicians and patients work to develop relationships during their usually too-brief encounters, a number of factors impede productive communication: power dynamics, impression management, feelings of shame, judgment and embarrassment, and challenging topics that can make both sides uncomfortable. Consider the interaction around planning for a life-limiting prognosis, discussing frightening risks of a procedure, encouraging someone to quit smoking, asking about depression or potential socio-economic challenges, or yes, a patient’s sex life.
Research shows people are less likely to express strong emotions in front of a clinician; they put on a good face and don’t want to be seen as weak, deeply upset, or unable to change. Stress also creates attentional narrowing, making it hard for people to focus, reason, and remember. And clinicians engage in impression management, too — wanting to be seen as intelligent, knowledgeable, and thoughtful.
Interestingly, research reveals we are more likely to honestly disclose information, including strong emotions, in a virtual setting. Even when we know our answers are ultimately going to a clinician or another human, we experience a sense of privacy. People say their responses seem to disappear into the computer.
This session will look at how multimedia programs and interactive voice response (IVR) phone calls can leverage design to help address stress and strong emotions, and capitalize on the existing benefits of a virtual setting.
Hear how Voice User Interface (VUI) designers use A/B tests examine how subtle psycholinguistic changes and differences in appeals (like an appeal to altruism) can affect intention to get vaccinated or help people to report on sensitive topics like depression, self-harm or substance abuse. The design of these calls take advantage of intention and momentum to help people take action and schedule screenings for things like colorectal cancer or diabetes eye exams.
Likewise, multimedia designers work with patients and families to better design content that reduces anxiety about an upcoming procedure, or boosts confidence to make a smoking cessation attempt, or helps them make and act on a decision to fill out advance directives.
Moving beyond these one-time events, how can we design interactions that extend over time to guide people through transitions from hospital to home? Find out how series of IVR calls and multimedia programs are being designed to help people engage in their care, feel cared for, report key indicators, and experience better health.
Creating the Healthcare “System”
Marc Braman, MD
The only way to get to a future where health care is what it could and should be, is to actually design and build the system.
Many are making wonderful widgets — but to little avail. They have no way to be part of a functioning system. Healthcare “system“ is a misnomer. Healthcare today in America is a “non-system”. It is a conglomeration of competing, independent, archaic systems that serve themselves and continue their own existence at the expense of patients and progress.
It is time to design and build a real “system” that actually works, and truly serves patients. It is like designing and building a space ship. We need a blueprint and very specific parts and functions. Some existing parts can be repurposed, some need to be purposefully built (like a patient advocacy organization). As we build, the pieces need to sync and make the whole system work.
But how do we get there? When you want a system to work for many different players, you develop a consortium — like is done in the tech world for things like USB, so it works on everyone’s machines for many different purposes. It will require a major team effort for a common mission.
Dr. Braman has spent many years developing the professional field of “lifestyle medicine” — ‘treating the cause’ of the majority of disease instead of just the symptoms. This big missing piece that science says is 75%+ of disease is now on the playing field. It is time to design and build the system. Join us and be part of creating health care for the future.
Your Activities of Daily Living (YADL): An image-based survey technique for patients
Healthcare professionals use Activities of Daily Living (ADL) to characterize a patient’s functional status and to evaluate the effectiveness of treatment plans. ADLs are traditionally measured using standardized text-based questionnaires and the only form of personalization is in the form of question branching logic. Pervasive smartphone adoption makes it feasible to consider more frequent patient-reporting of ADLs. However, asking generic sets of questions repeatedly introduces user burden and fatigue that threatens to interfere with their utility.
We introduce an approach called YADL (Your Activities of Daily Living) which uses images of ADLs and personalization to improve survey efficiency and the patient-experience. It offers several potential benefits: wider coverage of ADLs, improved engagement, and accurate capture of individual health situations. We will discuss our system design and the wide applicability of the design process for survey tools in health care and beyond.
YADL is designed to be personalized, engaging and easily accessible. (1) Personalized experiences: Instead of comprehensively listing all possible ADLs via word-based descriptions, we leverage images’ inherent ambiguities that allow for personal- ized interpretation and thus capture fine-grained ADL experiences; moreover, the inventory of images can be further tailored to specific demographics and disease contexts. (2) Patient engagement: We use representative activity images that are quick and easy to interpret. We argue that these photos are easier to understand and more effective at capturing ADL’s data as well. (3) Wide availability: YADL can be accessed via a web browser on desktop computers or on mobile devices so that patients can complete YADL at their convenience to keep timely records of their functional states. Photos also provide greater accessibility for lower literacy and non- English-speaking patients.
We have designed YADL using a patient-driven participatory design process to iteratively explore and obtain feedback from clinicians, patients, occupational and physical therapists. Preliminary user testing suggests that patients’ responses on YADL exhibit consistency with two widely- used instruments, i.e. Boston AM-PAC and WOMAC. The feedback collected during the design process uncovers several added benefits from YADL that could provide unprecedented information in understanding patients’ health conditions. We are currently validating YADL in comparison to the Oswestry Disability Index (ODI) in patients with lower back pain in an IRB approved study.
We will present the detailed design approach and discuss the lessons learned throughout the process of user interviews, rapid prototyping, user testing and iterative refinement. The iterative design process that we present can be widely applied to the general task of standard survey improvements and the transition from text-dominated interfaces to visually-rich interfaces.
Design thinking tools to support behavioral therapy for mental illnesses.
The process of recovering from a mental illness and succeeding with behavioral therapy requires a patient to make major life changes. It is a complex process of personal health innovation. But this innovation needs to happen at a time when the patient is experiencing significant distress and when their resources–emotional, human and financial–may already be completely drained. On top of all of that, the patient is responsible for implementing the changes necessary for treatment to be effective. Although research demonstrates the effectiveness of behavioral therapy, dropout rates from therapy are high. People are suffering not because we don’t have an effective treatment, but because we lack supports for implementing the treatment.
Can we take the same design thinking, change management, and innovation tools that help businesses navigate complex changes by designing for human needs, and apply those tools to supporting people successfully through behavioral therapy to overcome mental illnesses?
In this presentation, Mark shares his own experience of being diagnosed with several mental illnesses and how design thinking tools and concepts supported the changes he had to make to succeed with therapy and get his life back.
Attendees at this presentation will gain an understanding of:
- Specific challenges involved in implementing behavioral therapy, drawn from research studies and Mark’s own experience.
- The analogs between human-centered design innovation for business and the personal health innovations involved in implementing behavioral changes for recovery from complex, comorbid mental illnesses.
- Examples of design thinking exercises Mark has used with companies as a consultant and also used to support himself through therapy on the journey to overcoming OCD, Generalized Anxiety Disorder, addiction and depression.
- How people around the world are adapting these tools to help them with maintaining and improving their mental health.
- How health care practitioners and patients can utilize design thinking tools in their own practices to support treatment implementation and behavioral change.
An overarching theme throughout this presentation will be the need for all of us to engage in a more open dialogue around mental health and effective methods for treatment implementation. While the business world benefits from an ongoing, open, vibrant dialogue on how to innovate and navigate complex changes, there is no similar dialogue in mental health care. Through this presentation, with a mix of raw honesty, research, and experience, backed up by his mental health cartoons on the presentation slides, Mark hopes to spark meaningful dialogue amongst attendees. Not only can they help their peers or their patients with the design thinking tools explained in the presentation, but they might just help themselves, because every single attendee is guaranteed to have mental health, and nobody’s will be perfect.
They never knew what hit them: game technology unleashed in health care
It’s widely known that, statistically, a surgeon’s first 100 high-risk surgical procedures will have far worse outcomes than their next 100 will.
Virtual surgical simulation. It’s the key to solving this problem. Surgical simulation can drastically reduce risk, save lives and better the quality of care that physicians are able to provide their patients. We live in a day and age of technology, yet a new generation of physicians continues to be frustrated with surgical simulation that remains decades behind in terms of state-of-the-art entertainment.
An even larger concern is that outmoded design, distribution and business models make high-end medical simulation inaccessible to a large percentage of physicians across the world.
To train, practice a new procedure or refine technique, today’s surgeons need to travel, often several hours, to a surgical simulation center. Beyond just the physical location, these centers also cost tens of millions of dollars to build and maintain, and they’re stocked with physical simulators that cost hundreds of thousands of dollars.
In a way, surgical simulation is not unlike the video games of the early 1980s. To play Pac-Man three decades ago, a gamer would grab his/her roll of quarters and bike across town to the arcade, where the high cost of arcade machines and maintenance kept video game entertainment locked in a dedicated building. Today, video arcades are a remnant of the past. A billion gamers now play on the device in their pocket.
Video game technology is light years ahead from where it started. Yet surgical simulation centers remain stuck – spiriting physicians away from patient care and locking virtual training in an often difficult-to-access global ecosystem that simply can’t scale to the millions of physicians graduating into practice.
Inaccessible. Cost prohibitive. Unscalable. That’s the surgical simulation of our time. But in 2015, a team of renowned game designers, Emmy-award winning engineers, and LucasFilm-trained artists set out to unleash the world of video games into medicine unlike anything that’s ever been seen before.
Advanced simulators built on video game technologies have quietly rallied audiences of hundreds of thousands of medical practitioners while demonstrating marked improved performance in efficacy studies. All of the sudden, there’s this possibility. What if, through advanced simulation using video game technology, we can substantially shift how physicians are able to approach medicine?
By unleashing the technologies and design methodologies from the video games industry, game designers are radically reducing risk while changing the way surgeons worldwide stay up-to-speed with the latest progress in their field. Any place, any time, any physician.
Care plans: a path to driving better outcomes
It is how most patients feel at one point or another as they leave that sterile-smelling, fluorescent-lit doctor’s office. They have just spent 10-25 minutes being hastily examined, diagnosed, and, if they are lucky, educated about how to address their medical problem. They either leave the office empty-handed, or they walk out holding a generic pamphlet, which will likely end up under an unmanageable pile of papers or in the trash. Unless there was a major change in their treatment plan, many patients go home, forget what the doctor ordered, and continue on their usual journey of whatever harmful behaviors landed them at the doctor’s office in the first place.
This vicious cycle can be curbed by care plans.
A care plan is a synthesis of all plans of care produced by the patient and his or her providers to manage the patient’s day-to-day health. It serves as a shared conceptual framework to guide all care team members. Typically, care plans have been inconsistently implemented, but I envision a much brighter, more patient-centered future for the care plan.
In my presentation, I will demonstrate a newly designed care plan that encourages doctors and patients to work together to customize a standard, clinically valid template to fit the patient’s needs. This care plan will encourage positive behavior changes, as it is designed to intervene in the patient’s everyday life. Designed as a dynamic framework, the care plan will “learn” from patient input, ambient sensors, and population health metrics. The care plan will give patients ownership of their data, help them understand it, and empower them to take this knowledge and make healthier decisions. Patients will be able to easily share their plans and collaborate with their chosen care teams, comprised of both professional and nonprofessional care providers. Clinical quality metrics can then be used to assess anonymized health data to improve care plan efficacy and outcomes.
I aim to do more than simply educate my audience about what care plans are and why they are important. My presentation is a call to action. I hope to engage the audience in my effort to jumpstart the self-care movement by proposing a design strategy for a new care plan. At the core of this strategy are:
- Deciphering health history through summative self-quantification
- Making information visualizations insightful and actionable
- Facilitating behavior change through contextual step goals
- Creating collaborative power in an expansive care team.
I aim to instill the importance of these principles in researchers, designers, and others creating innovative health services, as well as invite them to join my efforts. Only in this new era of digital, standardized, adaptive care plans can we truly promote preventative self care.
Accelerating the promise of mHealth: the power of data, devices, and decisions for people living with chronic conditions
The explosion of health and fitness wearables and the emergence of connected medical devices has enabled us to acquire more data about ourselves at an ever-increasing rate, however we have not yet figured out how to use the data to immediate benefits or lasting positive outcomes. At the same time, the number of people living with chronic conditions, and the individual and system cost of managing these conditions, continues to climb. In this talk, health care design expert, Matthew Jordan will outline the opportunity presented by the proliferation of data and devices to create solutions that help people with chronic conditions understand and manage their conditions better. He will provide an overview of a conceptual vision for a cloud-based platform and mobile patient experience that integrates real-time environmental, connected device, measured biometric, and self-reported data from people with shared health factors. He will also highlight key design principles that will help make such a solution not only technically possible, but successfully adopted and implemented by patients and the health care system overall, finally delivering on the promise of mHealth.
Made with Meaning: Patient-Driven Innovation in the Age of Consumerization
Technology is changing how people experience health care. Driven by connectivity that has put information at people’s fingertips and forever changed our expectation for convenience, health care is in the midst of “consumerization.” In a world where patients have increased decision-making power and more responsibility for their health outside of clinical settings, the patient’s role is increasingly important in determining health outcomes. Engaged, confident patients are motivated to stick to treatment regimens and make often-difficult behavioral changes to achieve and maintain health. Despite their growing influence, few solution providers systematically engage patients in their product innovation and design process. This results in negative experiences, and frustrated, fearful patients. Stuart Karten believes that looking at the patient experience can reveal new opportunities for innovation. In this presentation, Stuart will introduce best practices for developing differentiated health solutions that empower and engage patients. He will discuss how to understand the needs of patients, caregivers, and health consumers on a deeper level, and how to translate such insights into meaningful health experiences that will boost engagement, capturing people’s hearts and minds through emotional connection. Attendees will learn from real-world examples where incorporating patient insights has driven innovation.
Attendees will learn:
- Social, economic, and cultural forces that elevate the role of the patient in the innovation process
- Examples where incorporating patients into the product development process has led to a better patient experience in both traditional and non-traditional health care solutions
- An expanded definition of who patients are and what insights they can contribute to product innovation
- A framework for understanding patients’ holistic needs to drive engagement
- A vision for the future of health care delivery
The problem with dying and what might we do about it
BJ Miller, MD
Discussion about the value of human-centered health care – through to the end-of-life experience – is gaining critical momentum across America. From peace of mind to personal and institutional cost considerations, this expanding dialogue is top of mind for a large part of our population as the Silver Tsunami of Baby Boomers – viewing themselves through the prism of their own parents’ end-of-life decisions (or lack thereof) – begins to age into a system where dissatisfaction pervades the conversation.
Actively engaged in this dialogue by passion, profession – and personal experience, BJ Miller, MD, is Senior Director and Advocate at Zen Hospice Project, San Francisco, and a 2015 TED speaker. Promoting a new paradigm of care, BJ encourages us to consider the possibilities when health care and our cultural perspectives allow life to be well lived to the end – both by incorporating the aesthetic realm in ways that both preserve dignity and nurture the senses and through humanistic changes to health care systems and policies.
His revelations are founded in personal experience: An electrical shock sustained while a Princeton undergraduate nearly cost him his life. It also endowed him with an extraordinary gift to connect with the patients he sees in his end-of-life and palliative care medical practice.
Miller will focus his talk on three key areas:
- Describing the promise of palliative care, contextualized within its historical rise and current role in health care, by naming suffering and quality of life as the center of the field. Its role is revolutionary and begs the inclusion of other non-medical fields and disciplines.
- Calling out health care system failures and offering up design prompts for creating a new system.
- Framing the makings of a civic model for end-of-life care – that aging and dying well should become points of pride for civil society and be routinized as such within any community daring to take this on.
Many of Miller’s convictions come to life at Zen Hospice Project in San Francisco, a secular residential hospice that acts as the most complete realization of the organization’s core beliefs, delivering patient-centered mindful care in a space that allows for physical and spiritual dignity. The “Guest House,” where the residents are cared for, has evolved into an incubator of innovation in caregiving. Miller and his team gain insight by doing, perpetually contributing to the development of a unique model of care grounded in actual work.
QS x NUI: Towards improved personal health informatics tools- design considerations and challenges
This paper attempts to investigate the potential benefits of using Natural User Interfaces (NUIs) when dealing with everyday health information. NUIs are understood here as those recent forms of human-computer interaction that attempt to incorporate ”more natural forms of interaction such as touch, speech, gestures, handwriting, and vision” or alternatively as “touch and multi-touch, and now, what could be called ‘no-touch’ interaction”. When considering the design of current personal health informatics tools, these emerging technologies can be of significant value now.
From a Personal Health Informatics perspective (a significant part of which is QS, or the Quantified Self movement/collective), NUIs can help seamlessly integrate into everyday living, in order to capture and collate health-related data on a day-to-day basis. This becomes crucial when considering the management of chronic diseases, which are now considered the predominant factor for up to 63% of mortality rates globally (according to the WHO). In the absence of a cure, early detection as well as strategies for effective and continual management of these conditions still remain the recommended methods of dealing with these diseases on a lifelong+everyday basis. This is also where such QS-driven tools are of value today, especially critical in instances where medical care may be limited, intermittent or even largely inaccessible. When considering the self-management of such diseases via these tools, several factors such as ease of use (and hence of interaction) become inherently important for any sustained use of these tools for long-term benefit; which is where NUIs can assist and play a significant role. This proposed research direction hopes to address these possibilities.
Amongst the several issues that arise when considering QS-driven approaches today, the one that’s considered especially relevant here is that of ‘making meaning’ (i.e. interpretation and comprehension), especially when the range of available tools being considered and/or the data obtained is too vast or varied. This can occur especially when tracking multiple parameters (as required in some of these conditions) which may in turn require multiple devices, or even when the generated device datasets become too dynamic and complex for convenient daily interpretation by a layperson or patient. As of now, no comprehensive ‘multi-fit’ platforms exist to bridge these gaps. Thus, this is where the role of the digital interface (and any modes of interaction contained therein) becomes critical; when considering long-term sustained use; crucial for any successful lifelong self-management of chronic disease. We look at recent projects based on advances in information, interface and interaction design that could assist here when operating across multiple devices and complex tracking parameters, as also list some early yet seemingly key challenges and considerations when developing comprehensive NUI-based toolkits ahead.
Envisioning modern prosthetic socket by integrating wearable technology into novel prosthetic socket design
One challenge in providing solutions to any public health problem is the availability of reliable and robust data. Historically, the orthotics and prosthetics (O&P) industries have either ignored the collection of data all together, or have been sufficiently satisfied with collecting self reported information from patients during in office visits. While retrospective data collection has it merits (inexpensive, short duration, and smaller “n”), it is also subject to bias. Patients often feel pressure provide clinicians with answers that meet their expectations, instead of their true experiences or results.
Digital health technology and wearable devices have been integrated into just about every single aspect of the health care community. From the casual use of FitBits and Apple watches to sophisticated ingestible devices for randomized clinical trials, adoption has skyrocketed. Prosthetics provide a natural platform for integrating digital health technologies, since amputees use their prosthetics daily to perform routine tasks. Innovative new designs that leverage technology and provide real-time feedback to the user and to their clinical team provide a platform for improved data collection and evaluation.
Objective merits of the product
The LIM Innovations SMART Prosthetic socket is a modular device consisting of a custom carbon-fiber frame, paired with a sophisticated textile dynamic tensioning system that contains an embedded set of electrical sensors and components. The technology facilitates measuring a number of functions giving the user a greater ability to monitor their health and communicates health status and metrics to their clinical provider. In this design, 5 sophisticated sensors push raw data to an interface that interprets, analyzes and displays relevant information in real time via an easily navigable smart phone app. Our design was built on stakeholder interviews and generative user research with amputees in a sprint format.
Intended data users
Amputees, researchers, and clinicians.
The adoption of digital health technology has been slow. In general 17% of Americans use mobile health tracking; 12% wearable technology. A critical factor in adoption is that historically, consumers or users have not been involved in the health-care decision-making process. Combine this with an industry where over 50% of amputees abandon their prosthetics due to lack of fit and comfort and the perfect environment exists for a technology driven prosthetics solution. Providing users with a simple solution to track daily health care metrics and real time information on residual limb health will improve management of health conditions. Pushing aggregate data to clinical or research teams provides large amounts of unbiased information for use in care or larger clinical studies.
This ain’t your grandmas hospital: how technology is revolutionizing the design of health care facilities
More than $97 billion is being spent on hospital construction projects in the United States this year alone. Of these projects, one in Denver is already $1 billion over budget and one in San Jose will cost $300 million more than initially expected.
With so much at stake and lives on the line, why is waste and inefficiency in the design of health care facilities still such a problem?
It turns out, hospital leaders have tremendous difficulty making decisions about physical space with certainty due to the outdated architectural tools and methodologies that slow the decision-making process, lead to division instead of consensus, and result in costly changes and delays midway through construction.
Luckily, forward-thinking architects are partnering with on-staff data experts, strategists and clinicians. As an integrated team, they are ditching drafting paper and siloed teams in favor of virtual reality headsets that provide immersive 3D experiences, interactive polling, customized apps and population health data. These tools enable better engagement with stakeholders, including doctors, RNs, patients, staff, family and community members; real-time iteration of hospital designs that used to take months to complete; better interpretation and use of data to ensure facilities are built at the right location with the right services; and better communication between architects and hospitals.
In this presentation, international health care architect Joan Saba teams with former Microsoft tech evangelist John SanGiovanni to showcase new and future design tools, their ability to drive consensus through crowdsourcing and the role they play in creating better facilities through design.
Designing health care that delivers more health, delight
It’s no secret that the health care system is inefficient and, more often than not, confusing to patients. Research indicates that the number one contributor to health is access to good health care, yet traditional health care models often limit access. What if we reimagined health care in a way that puts patients’ need first? What if instead of incremental change to a legacy system, we build it from the ground up?
Imagine incorporating technology seamlessly into the patient experience and responding to the needs of the most demanding generation that is underserved by health care today: millennials.
This resulting experience would be more personalized, less institutional and designed for everyday use. It would be more accessible in neighborhoods and via smartphone, and more transparent, with prices for services clearly posted and accessible. It would offer more personalized health care, instead of taking a one-size-fits-all approach, and it would integrate exercise, healthy eating and mind-body medicine into the clinic, as ways to prevent chronic disease and achieve better health.
To accomplish this, two physician entrepreneurs assembled a team of leading designers, technologists, and brand experts with a principal goal: to redesign a well-established network of retail urgent care clinics into a full stack of medical services for millennials, complete with tightly integrated insurance. This generation gets messages, movies, and massages on-demand. They also seek to learn how their bodies work, and how combining food, medicine and relationships can help them go beyond basic wellness. They are accustomed to designed experiences, such as the look and feel of an Apple store. What if health care was designed in this way? To fully realize the benefits, they envisioned a mobile-first approach, integrated UX design and on-demand retail-style service.
The result is a complete care system that launched in 2015. It offers primary, urgent and advanced specialist care, and insurance people can use every day, like a gym membership, to access a network of neighborhood-based retail clinics for all needs. The system includes emergency care, as well as red-carpet admission to local hospitals when needed, delivered as part of a tightly integrated, technology enabled program. For example, patients and their specialists have an ongoing engagement via text message, email and video that lasts until the patient is satisfied with the outcome.
Dave Sanders, co-founder and CEO of ZOOM+ can discuss the design and creative thinking that went into this model of what health care might look like in the future. He can discuss examples of cost-savings gained through an innovative approach to triaging 80% of what emergency rooms treat at a significantly reduced cost. He can also provide examples of how applying a design mindset has influenced all aspects of care delivery within the system ZOOM+ has created, which includes 31 neighborhood clinics in the Portland and Seattle metropolitan areas.
Designing for core needs
As human beings, we each have core needs that must be understood and satisfied: like a sense of belonging, connection, understanding, autonomy and control. These core needs and our desire to have them met are heightened in times of difficulty, as is often within medical contexts. For patients and their loved ones, being diagnosed with a new disease, undergoing intensive medical treatment or facing death can be one of the most profoundly challenging and vulnerable circumstances in life. It is at once the greatest challenge and opportunity in health care. Tending to a person’s emotional and psychological needs is a fundamental component of “caring” for them. It is also the crux of providing optimal patient experience, offering the best perceived and real care to patients, and creating truly deep relationships between patients, their families and a health care organization. For administrators, determining common superficial needs of patients and families is a challenge, but uncovering these core needs requires a different approach. Not only is it very difficult to ever reach that emotional space, it takes time for staff to get to know their patients and families, especially on a very personal level, and time is particularly constrained in a clinical setting. It also requires clinical staff and caregivers to have specialized talent and training to effectively connect with people and determine their deeper needs while operating within a fast-paced and highly regulated clinical environment.
However, the opportunities created by understanding these core needs and directing efforts, investments, or other resources towards them, could be significant.
At Lucile Packard Children’s Hospital, in the Bass Center for Childhood Cancer and Blood Diseases, we have designed and tested an effective and efficient method for capturing the core needs of patients and family members who have undergone treatment. The methods build on principles of design thinking and needfinding, and use clinically adapted design probe tools that help participants reflect deeply and communicate their core needs and feelings. We have been able to facilitate serious, yet often fun and personally satisfying, discussions with patients and their family members. The sessions have identified numerous immediately addressable issues, areas for future development in providing patient and family support, and other insights for improving hospital experiences and care. Interestingly, the process itself was also intrinsically rewarding and therapeutic. According to a survey completed, the sessions made participants feel inspired and excited, a deeper sense of purpose in life, like they were working with people who genuinely cared for them, and offered the opportunity to begin to relieve deep emotions, fears and traumas unknown to the care team and even among family members. The method and tools can be adapted to other clinical and design contexts.
How to instantiate digital empathy
Jordan Shlain, MD
Empathy is when you can put yourself in someone else’s shoes and feel what they feel. Carl Rogers, an influential American psychologist said, “When empathy is extended, it satisfies our needs and wish for intimacy, it rescues us from our feelings of aloneness.” Can empathy be extended through digital health in a meaningful way? Can it extend and scale the reach of the physician outside of the four walls, and meet people where they are?
To understand empathy, we must acknowledge that the most basic of emotions such as fear and aggression are under the influence of the ‘reptilian brain.’ No one wants to need health care. Instead, it is a conscious or subconscious fear thats drives much of our behavior related to health care; fear of pain, of an undesired outcome, of isolation. In this context, we should appreciate that patients are not ‘consumers.’ A consumer is a person with choice and freewill, interested in trading a resource for a ‘good.’ A patient, on the other hand, is someone with tethered-will, carrying fear about trading a resource for a ‘bad.’ A patient is someone faced with a decision that he or she would rather not make at all. Unlike a consumer for whom the choice may be optional, for a patient, a choice is not optional. Even no choice is a decision. And when a health care decision is involved, empathy from a health care provider can have wonderful effects.
By way of example, HealthLoop is a digital patient engagement platform that facilitates automated virtual check-ins between the physician and patient between visits, around an episode of care such as a surgical procedure. Through automated emails coming from the physician, patients at home, both pre- and post-procedure, are solicited to complete digital check-ins containing guidance and questions served up in small pieces at the time that they matter most. When the messages honor concerns about pain, recovery, and uncertainty, then patient engagement, even with automated messages, can achieve unprecedented results.
HealthLoop patients have a sustained engagement of 72%. A byproduct is that 82% report feeling empowered in their own care, 64% of patients who might not have remembered to stay compliant are guided back on track, they enjoy a 25.5% reduction in 30-day hospital readmissions, and over 88% are satisfied or extremely satisfied with their care. And when patients perceive empathy from their physicians through ongoing outreach, they prove to be very willing to give back. Practices can learn that while 52% of their patients feel that their expectations for the episode of care are set accurately, and expectations of 40% are “in the ballpark,” 8% report that their expectations are not set well. Such insights provide practices with new ways of identifying opportunities for continuous process improvement. And empathy also proves that the digital relationship can yield durable benefits. At 1-year post-procedure, over 62% of patients continue to submit digital patient reported outcomes back to the practice.
We are entering a new era of digitally-enabled health care. While digital dialogues can enable more frequent touch points between patients and physicians, it would be easy for them to be clinically factual, losing the human touch. However, when crafted with empathy at their core, they can transform the patient experience. As a recent piece on CNN.com reported, “Automated empathy allows doctors to check on patients daily,” and a new era in medicine, one in which empathy and follow up are becoming best practice, is beginning to unfold.
Establishing human-centered design as a new competency within medical education: preliminary results from a University of Virginia School of Medicine pilot program
Matthew Trowbridge, MD, MPH
The practice of medicine is changing at an unprecedented rate both at the level of individual physicians and the system as a whole. Today’s student doctors will be called upon to help lead necessary shifts to more patient-centered care while also integrating highly disruptive technological advances ranging from personalized genomics to ever more sophisticated medical use of 3-D printing. Yet, despite this approaching paradigm shift in practice, medical education is not keeping pace.
Our team believes that achieving competency in human-centered design (HCD), often popularly referred to as design thinking, can help prepare future doctors to be successful and impactful in the midst of rapid changes in the health care practice landscape. To this end, the University of Virginia (UVA) School of Medicine has approved our team to pilot a specialized curriculum, entitled the Human-Centered Design and Medical Innovation program. First year medical students participate in a year-long set of workshops and hospital-based applied projects based on principles of HCD & design thinking.
The fall semester workshops are spent learning basic principles and skills of design thinking: interview skills, user data collection, idea mapping, data synthesis, rapid prototyping, and diverse approaches to interdisciplinary collaboration. Teaching is highly applied. For example, this past fall, students learned and immediately used HCD skills and concepts to better explore personal health topics relevant to themselves and fellow medical students. For example, in the pilot, students examined the issue of establishing and maintaining healthy eating practices while adapting to realities of being a 1st year medical student.
In the spring semester, currently underway, the focus shifts to applying design thinking techniques to current, real world, complex challenges facing UVA health system itself. For example, our current pilot program students are working closely with UVA quality improvement team to capture patient perspectives on the issues of improving home health care support for patients with complex medical issues and inpatient fall prevention.
This is the first year of the HCD and design thinking pilot at UVA medical school. Therefore, a formal evaluation remains forthcoming. However, our pilot program demonstrates both clear demand among 1st year UVA medical students and feasibility within their heavily structured schedules. In response to an introductory email, 50 of 160 incoming medical students expressed interest in the program, 30 attended an information session during orientation, and 10 students were ultimately accepted via an essay-based application and series of interviews. Feedback is very positive with students expressing strong appreciation for the applied aspect of the program – particularly the opportunity to practice skills such as interviewing, synthesis, and prototyping.
Architectural Design for Improved Healthcare Delivery
Can architectural design impact health care delivery?
A 1984 study published in Science changed the way architects design health care spaces. View through a window may influence recovery from surgery demonstrated that post-operative patients assigned to a room with a window view of a nature setting had shorter hospital stays, took fewer analgesics and received fewer negative evaluative comments in nurses’ notes. This marked the advent of Evidence-Based Design (EBD), now standard practice in health facility design. Analogous to how physicians utilize evidence in making decisions about individual patient care, architects now base their decisions about the built environment on research to achieve the best possible outcomes. This represents a major shift from basing design decisions solely on tradition or opinion.
EBD research has demonstrated that design interventions can impact patient outcomes by decreasing iatrogenic infections, medical errors, and length of hospitalization. There is a business case to be made with ongoing operating savings when the market share impact of EBD interventions is realized. Benefits to clinicians have been documented with respect to improved satisfaction, communication, and teamwork. Studies confirm behavioural and psychological benefits of nursing unit design concerning the delivery of patient care- specifically in reduced walking time, better utilization and satisfaction. Within the critical care setting, physical and visual accessibilities can affect patient outcomes in severely ill patients, who may experience higher mortality rates when assigned to rooms not easily visible from the central nursing station. What is the model for architects and clinicians to work together towards a common goal of evidence-based practice?
How might we re-envision the hospital going forward?
Despite this shift towards an evidence-based practice, health care architecture has remained similar for decades. Hospital activist Dr. Leland Kaiser stated that “The hospital is a human invention and as such can be reinvented any time.” Although the hospital is meant to be a place of recovery, health care has not always been designed with the needs of the patient in mind. Hospitalization can often result in complications unrelated to the problem that caused admission, followed by an irreversible decline in functional status and quality of life. Certain aspects of hospital design can contribute to this decline. Although there is no therapeutic value to bed rest, patient rooms still remain focused around the bed. How can we re-envision design so that the bed is not the focal point of care, shifting the focus to encourage early patient mobility?
Design guidelines now set minimum standards for single-patient hospital rooms given evidence for improved privacy, infection control, and quality of care. However, design must find a balance between privacy and easy physical and visual accessibilities. Research has demonstrated that certain room layouts are more conducive to clinician interactions and therefore improved communication and teamwork. We should begin to question whether a one-size-fits-all model for the hospital room is adequate for all patients.
It may be time to disrupt our current design thinking and reinvent best practice trends. Architects are considering ways for hospital corridors to transition towards dynamic areas of physical therapy, multidisciplinary rounding, and family discussions. How we design and utilize circulation space is changing. The “on-stage/off-stage” model, inspired by Disney, allows guests to enjoy their stay at the theme park and never run across workers doing maintenance or characters without their costumes. This concept is now seen in newer hospitals where the design separates public and staff circulation paths. While medicine has moved towards the patient as the advocate of their own health care, with clinicians providing expertise to aid in their decision-making, design is moving to provide a separation. Should the built environment separate clinicians from patients when the clinical model is trying to promote physician-patient interaction?
Can we leverage architectural design to solve health care challenges?
Despite the inclusion of clinicians into the design and construction process through workshops and participation in full-scale mock-up spaces, there still remains some disconnect between the initial vision of those who design the hospital and final clinical use of the space. An example of the architecture-medicine disconnect can be seen with the examination room configuration. Medical students are taught to examine patients from the right-hand side of the body, enabling comfortable measurement of various anatomical landmarks. Nevertheless, physicians frequently enter spaces with layouts that do not permit this right-sided access, as architects are generally unaware of this convention. Designers can walk the halls and talk to clinicians, but it can be challenging to learn the intricacies of a particular profession and its details of practice. Opportunities are still lacking for designers to shadow clinicians, allowing a deeper understanding of health care delivery.
The hybrid dochitect model represents a way to find common ground between clinicians and architects- a first step in bridging this gap. This provides a unique opportunity for architects to experience the world of medicine from a perspective that is typically hidden and allows physicians to understand how design can create a context for participation. Hybrid professionals can provide integrated solutions which cross disciplines in new ways. By applying design-thinking to medicine, multidisciplinary approaches for solving current health care challenges can be developed.
Lighting our way to fewer falls: Co-creating a design solution for a randomized controlled trial to improve patient safety
The modern patient safety movement catalyzed a large body clinical intervention research towards finding solutions for the high rates of unintended harm among admitted patients. Almost two decades on, it may be concluded that the majority of safety-focused intervention trials have not been effective and that levels of patient harm are yet to abate noticeably. Commentators commonly note the challenging nature of health care settings and the complexity of many interventions themselves as central reasons for the poor success rates observed. However, there is now growing consensus that the lack of application of rigorous design methods in the early development of interventions and the inconsistent engagement with actual users (patients and staff) may be partially to blame. With the increasing promotion of user-centered design frameworks, many health teams have successfully deployed participatory approaches in field based health service improvement projects . However, good examples are needed to demonstrate the meaningful application of co-design methods in clinical intervention design.
The authors recently concluded a pilot cluster randomized controlled trial (RCT) of a redesigned night lighting scheme to reduce falls and promote sleep across six hospital wards over ten months (n≈5900) at the Royal Brisbane and Women’s Hospital (RBWH). While environmental redesign itself constitutes a unique target in patient safety research, our pilot trial was also novel in both research methods (in the use of a stepped wedged cluster RCT design) and data collection approaches (environmental state sensing and continuous activity monitoring devices). Critically, the design characteristics of the intervention were derived through three distinct pieces of prior work. Namely, i) a single site naturalistic observational study of nighttime ward lighting across 15 wards at the RBWH, ii) A conceptual design, prototyping and engineering trial (actual implementation in a non-operational clinical space) and iii) a formal multi-site (three hospital facilities, twelve wards) design optimization study involving in-situ demonstrations and participatory co-design with admitted older patients and care staff in operational wards. Formal periodic design reviews were also included to integrate suggested improvements after each set of ward demonstrations.
In this presentation, we will focus on the value realized from investing in formal engineering and co-design research prior to the pilot trial. We will describe how the solution evolved from the prototypal concept as developed by the expert group to the final version piloted and how user feedback shaped these decisions. We will conclude with key messages for academics and patient safety practitioners on how to incorporate evidence-based co-design methods in clinical trial development such that interventions are better calibrated to the needs of patients, health care staff and care systems.
Developing tools for improving quality of life with people living with Parkinson’s
Developing tools for improving quality of life with people living with Parkinson’s
Parkinson’s disease is the second most common neurological disease in the world, with as many as 10,000,000 people currently living with the diagnosis. This figure is expected to double by the year 2030 largely due to improvements in medical treatment and care that will allow individuals to longer (Dorsey, et al, 2007).
In the recent past, there have been a number of projects that have been undertaken in order to better understand aspects of the disease. From startups and venture backed projects to multinational initiatives in the European Union with budgets in the millions of euros, technologies have been developed to monitor symptoms in order to optimize medication timing (Lakshminarayana, 2014), improve physical performance (Ginis, 2015) and quantify disease progression and potentially segment the disease into different phenotypes (Sama, et al., 2012; Serrano, et al, 2015).
Parkinson’s disease provides a number of symptomatic components that make it a particularly attractive target for technology and innovation. Some of the most prominent features of Parkinson’s lend themselves well to monitoring and analysis via technology. Tremor, for example, can be quantified with accelerometry (Daneault et al, 2013); in addition, it is typically responsive to dopaminergic medications used to treat the disorder (Buijink, et al, 2012), which provides a mechanism for assessing efficacy of novel compounds and other treatments including surgery as well as nonpharmacological approaches. Other aspects of the disease such as changes in gait (Ginis, 2015), axial mobility (Horak, et al, 2015), vocal volume and quality (Arora, 2015), fine motor control (Stamatakis, 2013) and changes in sleep function (Maglione, 2013) also lend themselves well to identification, assessment and ultimately, quantification via currently available technologies.
Despite this, the technological landscape within the Parkinson’s community is littered with false starts, incomplete ideas and poor implementation. People with Parkinson’s present with a unique set of challenges that can have a significant impact on their ability to interact with various technologies including issues with fine motor control, visuospatial deficits including decreased contrast sensitivity as well as cognitive changes that can significantly impact the ability to interact with different technological devices.
Developing a product that truly helps people live with the disease requires inclusion of the people living with the disease (the true “experts”) as well as their care partners, health care providers and others in every step of project design. It is only the consideration of these multifactorial symptomatic influences alongside elements identified by individuals living with the disease that will ultimately lead to design of a successful product that will truly improve quality of life for people living with Parkinson’s.
Re-designing cancer care to radically improve value for patients
Our team at Stanford’s Clinical Excellence Research Center used design principles to develop a model that radically increases patient value in cancer care — defined as improving patient-centered outcomes (e.g., survival, quality of life during treatment, experience of care) while decreasing costs to achieve them. We utilized an innovative health care delivery redesign method developed at Stanford , used to create multiple care models implemented at health systems across the US.
Observations and interviews with patients and providers were conducted at 3 US cancer sites using human-centered design methods from Stanford’s dschool and Biodesign Program. Sites were selected based on claims data and nationally reported oncology quality metrics (Quality Oncology Practice Initiative (QOPI), and ASCO’s Choosing Wisely) to include both those that performed in the top quartile for quality and cost and an average-performing comparator. Site visits were complemented with a review of literature and expert consults on value improvement for cancer, oncology practice, health and behavioral economics, and an analysis of “adjacent possible” medical conditions and industries. An additional 4 academic medical centers were visited to observe exemplary performance on one or more of the areas of opportunity for improving value. From this, we used an iterative design process to 1) identify the key features of care teams performing at the current value frontier; and, 2) incorporate these features into a scalable cancer model that eliminates the use of medical services of little, no, or even negative value to patients.
A key finding in part 1 was that an integrated multidisciplinary team (IMT) provides the foundation for high value care. Best in class sites offered patients multidisciplinary evaluation, a clearly outlined treatment plan based on protocols affirmed by all care team members, feedback loops to improve care, a patient “captain” across the care continuum, 24×7 access to the clinical team, and co-located specialists with disease-specific expertise. Hand-offs at these sites are smoother since patients and specialists reference the same clear plan. In comparison, lower-performing sites struggled with fragmentation, poor care coordination, gaps in care, delayed care, and duplicated or even harmful medical interventions.
In part 2, we translated the most impactful aspects of IMTs to a scalable care model that could be implemented in a variety of local contexts. These include: 1) clearly outlined treatment plan based on protocols affirmed by all care team members, 2) feedback loop to improve care, and 3) an approximation of team co-location through financial, administrative and social tools that foster shared accountability for patients’ well-being.
Our forecasts suggest that this IMT model will preserve survival benefits by improving guidelines-concordant cost-conscious treatment delivery, better addressing symptoms and side effects of treatment that lead to unplanned hospitalizations, and demonstrate the potential to decrease national spending on cancer care by 12-15% ($21-26B) by removing wasteful spending.
Redesigning maternity and early child health towards integration and better value
Jody Lin, MD, Victoria Woo, MD
Per capita health care spending in the US far exceeds any other country in the world, without better population health outcomes. This value gap extends to maternal and infant mortality, which is higher in the US than most other industrialized countries. The health of a mother and her child have significant impacts on each other, and these effects have lasting downstream costs to the health system and society. Despite these interdependencies, obstetric and pediatric care operate separately in the current system. The progression of US health care to a value based system provides a unique opportunity for blended models of maternity and pediatric care to address health for the maternal-child dyad.
Our multidisciplinary team of health care delivery design fellows, consisting of an obstetrician, pediatrician, midwife and health psychologist, worked to design a model of perinatal and early child care which provides improved outcomes and experience at a lower cost. To develop our model, we followed a regimented design thinking process consisting of six steps: immersion, literature review, observation, ideation, prototype and test. We spoke with experts across disciplines, visited innovative sites around the country and performed a thorough literature review in order to understand this population’s needs. Next, we sought to more clearly define the observed needs and then ideated on potential solutions to address these needs. We prototyped our model and went through multiple iterations with a core group of expert mentors. Lastly, we presented our findings to potential partners who will adopt our model to test in their health delivery systems.
We propose a new model to deliver value based care for the maternal-child dyad.
Key components of our model include:
- Personalized prenatal and pediatric care for the family’s needs to maximize health outcomes based on risk stratification. These include (i) technology enhanced routine care, (ii) comprehensive coordination for high medical risk patients, (iii) parenting skills home visiting and group prenatal care programs for socially at risk families.
- Prioritize screening for maternal depression through the maternal and postpartum period with access to in-home cognitive behavioral therapy to improve the mother’s health and reduce the negative impacts on children’s wellbeing.
- Improve screening and referral systems for the mother around women’s health issues at pediatric visits. This addresses the current care gap we observed where mothers bring children to a pediatric provider, but often don’t seek care themselves even when they were identified to have new diseases during pregnancy. Conclusion: Using a human-centered design approach, we demonstrate a model for integrated maternal-child health care delivery, which we believe can improve outcomes for mothers and their children with lasting effects on both health and cost savings for the individuals and the country.
A novel approach for reconstruction of segmental jaw defect
Jaw defects may result from trauma, inflammatory diseases or upon tumour resection. The gold standard for jaw reconstruction remains to be the microvascular free flap harvested from the fibula bone. Despite reported to have high success rates of more than 90%, this strategy requires two surgery sites and hence, significantly extends the total surgery time. In the Singapore General Hospital, the entire surgical procedure of jaw reconstruction using a fibula flap takes approximately 7-12 hours, and involves vessel anastomosis and shaping of the fibula to fit the contour of the patient’s jaw. This procedure is time-consuming, complex and requires skilled expertise. Furthermore, patients will be subjected to donor site morbidity, and require longer hospitalization stay and rehabilitation post-surgery. With the advancement of medical technology over the years, patients now have higher expectations in terms of functionality, aesthetics and quality of health care delivered.
This study aims to develop a novel endoprosthesis system that can provide a safe, stable and functional reconstruction of the jaw upon segmental resection. Our solution is intended to be an off-the-shelf titanium-based system with a novel modular design for the repair of jaw defects of varying sizes. This solution involves only one surgery site and eliminates harvest of patient’s own tissues, hence reducing the complexity of the surgery significantly. This approach also eliminates any potential risks of complications such as infection and pain arising at the fibula donor site and associated mobility inconvenience.
With this endoprosthesis system, we expect the entire surgical procedure to be shortened by an average of 5 hours. As no post-operative monitoring of the donor site is required, patient’s hospitalization stay is significantly shortened from 1-3 weeks to about 3 days. Our team believes that this novel solution will have a significant impact on public health and will provide disruptive value to the field of oral-maxillofacial reconstruction.
Therapy, Tech & Truth. Merging Digital and Behavioral Psychology to Drive Positive Social Change
Can a mobile application help you keep your teeth for life? Could it help the severely mentally ill quit smoking? How about helping autistic children create healthy habits that were never previously attainable through traditional parenting and medical techniques?
When you combine modern behavioral psychology techniques with the the latest in technology and Motivational UX, digital surpasses “useful” and becomes a platform for positive, social change. Welcome to mobile application markets’ middle age. We’ve grown up and are spending more time, money and creativity than ever focused on clinically tested, customer-validated, purpose-driven products for the greater good.
Our near term future is one of connected, at-home devices collecting data that will change insurance models, patient care, and, quite possibly, improve our lifespan. In a presentation delivered by Marr, he will discuss highly anticipated, purpose-driven, breakthrough digital platforms that support positive reinforcement and enable healthy habits. Key audience takeaways include:
- The Healthcare/Psychology Movement’s Digital State of Affairs: How the technology market is on the cusp of creating digital experiences that build healthy habits and provide 24/7 support to doctors, health care providers, psychologists and psychiatrists, and case workers;
- Social responsibility and the Digital World: Specific ways in which the digital community can play a more active role in utilizing digital to help a demographic that doesn’t just meet a client’s bottom line;
- Digital as the Ultimate Support System: In the medical and health industry, a doctor could prescribe an app specifically designed to help reduce cognitive load, harness motivational user experience and help create new brain synapses to cement healthier habits;
Brian is a marketing strategist, business leader, and educator highly adept at discovering and applying the triggers that motivate customer behavior towards a desired business outcome. His strong history in software product management, digital media, and advertising has resulted in the opportunity to work with clients including Mattel, Wilson, Seattle Sounders FC, Windows Phone, and Pepsico. Life before SI included roles as Managing Director/Director of Digital at the Wexley School for Girls ad agency, Group Marketing Manager of Emerging Media at Microsoft, and Senior Product Manager for Windows x64 at Microsoft. He also worked at a few Silicon Valley startups you probably (and unfortunately) never knew about. On the other side of the podium, Brian teaches two graduate courses in the Master of Communication Leadership program at the University of Washington.
How can we teach the elements of diagnosis to improve a key factor in adverse events and patient outcomes?
Since the Institute of Medicine’s 1999 report: To Err is Human, medical errors have been a topic of much interest. Diagnostic error, thought to be present 10-15% of the time and account for significant patient morbidity, was not specifically addressed until the IOM’s 2015 follow up: Improving Diagnosis in Health Care. Improving the diagnostic process was described as a “moral, professional, and public health imperative,” and the report called for enhanced professional training in diagnosis. But there are no training models for physicians which have been shown to lead to fewer diagnostic errors. Cognitive errors have been highlighted as causative and “debiasing” techniques touted to improve diagnostic accuracy, however, these strategies are unproven, may target novices more than experts, and importantly, alter the problem solving machinery that currently enjoys an 85-90% estimated accuracy. Systems approaches to this issue are limited due to the difficulty in identifying diagnostic error in a timely manner, and in agreeing what constitutes a diagnostic error rather than variability in practice or in disease process. Up until this point, identifying, studying and learning from previous errors has generated most recommendations on feedback, metacognition, and culture change. Rather than focus on misdiagnosis, we can design a focus on clinical reasoning based on the elements that experts cite in their decision making.
- Critical interpretation — Variable weighting or excluding of data points
- Test interpretation — Limitations of a test, Bayesian thinking, pre- and post- test outcomes
- Risk assessment — Reliance on base rates, elevating potentially lethal or time sensitive diagnoses
- Algorithm construction — Will this test alter management? Is the search for a diagnosis over at the end of the algorithm?
Curriculum design needs to reflect these core items as longitudinal elements taught throughout core medical topics. Technology can assist with these tangible diagnostic elements. Chest pain evaluation remains a source of great practice variation and high potential morbidity. Standardizing interpretation of data points by providing relevant evidence may improve decision making and prevent overtesting. When ordering testing via EMR, test characteristics such as cost and positive/negative likelihood ratios could be provided. Finally, de-biasing may be a parallel strategy but visualizing a workup algorithm may avoid premature closure and keep multiple differential diagnoses that cannot be excluded available for consideration. By teaching the elements of diagnosis and giving practitioners, not point-of-care guidelines, but rather point-of-care information, we can explicitly teach clinical reasoning and decision making.
Expression made possible with emoticon keyboard
Trapped in silence. Patients with conditions like Locked-in Syndrome, those in emergency care, and those in intensive care share the struggle to communicate. Such individuals face intense agony in conveying their feelings or desire. The pace of innovation is limited by lack of intelligent machines that are available outside of research settings and yet affordable.
By selecting emoticons using eye tracking, gaze fixing, and machine learning, patients will be given the ability to express themselves effortlessly and relatively quickly. Emoticons will be displayed on a grid with the columns delineated as A, B, C…and the rows labeled as 1, 2, and 3… For instance, the happy face emoticon may be located at A1. Eye tracking will function as a mouse as the user is able to navigate between the various screens. Brain-Computer Interface (BCI) will allow the patient to “select” their desired icon, as the patient visually pulls icons that he/she desires. BCI has the capacity to decode brain waves utilizing the data from an Electroencephalogram (EEG), which records electrical activity in the brain. Artificial Intelligence (AI) can rapidly fulfill the need of accurately and precisely reaching the conclusion in a fraction of a second—like the fully functional brain. With the assistance of brain waves, eye-tracking mechanisms, and AI, the device will be able to determine overlapping areas thus leading to the selection of the desired emoticon. The use of emoticons will ensure that communication is fast and easy. A text-to-speech command will enable long-distance communication with caregivers when the selected icon is verbally stated. With this technology, patients will also have the capability to send text messages to their caregivers with the input of texting software. Most importantly, this technology will cross the cultural and language barrier as knowledge of a certain language (i.e. English) becomes immaterial. Symbols will allow patients to be able to express how they are feeling (scared emoticon), where they want to go (house emoticon), and even what they want to eat (burger emoticon). In the form of a headset, this technology will revolutionize the lifestyle of patients.
With this approach, individuals will no longer be limited in terms of communication. This concept will provide a voice and reduce frustration associated with person-to-person interactions. Emoticons are concise and straightforward, which will be especially helpful for patients. Even a single symbol can provide a significant amount of insight. The patient will not have to struggle to express their feelings, desires, or needs. This, in turn, will result in better care of the patient and an improved outlook.
Medicine – design partnerships: designing virtual reality for improved burn patient care
The acute injury of a burn followed by the days or weeks of frequent wound care and dressing changes is one of the most painful things a patient can experience. Opioid pain medications, the mainstay of pain management, have well known short and long term side effects. Despite these medications, pain often remains inadequately controlled in burn patients.
Adjunctive measures for pain control, including distraction, are known to be effective. The immersive environment of virtual reality has been demonstrated in numerous studies to be a highly effective method of distraction for burn patients receiving wound care. However, virtual reality is not widely used in clinical practice outside of research studies because these systems are customized and expensive. Emerging systems such as the Samsung Gear VR and Oculus Rift dramatically increase access to virtual reality, but even these may be too expensive for clinical settings, particularly if they are single-patient use to minimize infection control concerns.
Google Cardboard presents an opportunity to pair nearly ubiquitous smartphones with a sub-$10 cardboard box and lenses to create a virtual reality system suitable for health care. However, existing Google Cardboard headsets are not designed for a moist burn wound care environment; and nearly all existing games are designed with the assumption that the user is upright and able to look and move freely in a 3D environment, which is not feasible in patients receiving burn wound care.
This presented a design challenge – understand the patient and nursing constraints involved with burn wound care and design a headset and game suitable for these conditions. Dr. Brian Pridgen, a health care design fellow at global design and strategy firm frog and a Stanford Plastic and Reconstructive Surgery resident, presented these challenges to frog. Working collaboratively, we developed a prototype headset that is extremely affordable and feasible for use in the burn wound care environment. This headset is currently being tested in an ongoing pilot trial with burn patients, which has had excellent preliminary results. A game that will allow patients to remain appropriately positioned for burn wound care while being immersed in a distracting virtual reality environment is currently under development and will be ready to test soon.
This work is an example of the power of partnerships between medicine and design. Starting from a clinical need identified by Dr. Pridgen, frog is developing an experience for burn patients through product design and virtual reality software design to improve patient care. This solution could increase access to affordable virtual reality for patients worldwide in burn centers and inspire therapeutic applications in other clinical scenarios. We hope that this work serves as a model for future medicine-design partnerships to identify clinical needs, design practical solutions, and bring these solutions to patients and the health care system.
High tech patient education in a value based world: a low-cost production method for 3D printing kidney models
Empowering patients to make informed decisions about their health is foundational in the transition to value based care. Patients with small kidney cancers face a spectrum of treatment options ranging from surveillance to radical nephrectomy, with important tradeoffs in terms of survival, risks, and renal dysfunction. Our previous work has found that patients lack basic anatomic knowledge that in a crucial component of making informed decisions when faced with this choice. 3D printing provides an exciting avenue to educate patients about their disease with individualized physical models that they can examine in the office setting. Until recently this technology has been expensive, ($750/model), precluding routine use in the clinical setting. We developed a low-cost, open source method to print 3D kidney models for use in patient education.
An open source program used for CT visualization and medical image computing (3D Slicer) was modified with an algorithm used for identification of necrotic nodes on PET imaging. The tumor and the normal renal architecture were extracted in series using this modification. The resulting file underwent Laplacian smoothing to remove artifact and was scaled and repaired using two additional open source programs designed for processing and editing of unstructured 3D triangular meshes (Netfabb, MeshLab). The resulting model was sliced and printed using an open source printer driver and a budget, dual extruder 3D printer (MakerBot Desktop, FlashForge Creator Pro).
3D models of several sizes and tumor configuration were printed. The normal kidney parenchyma was printed in clear, with the tumor in red. The extraction and creation of a printable file took on average 30 minutes. A 1/3 scale kidney and tumor took on average 1 hour to print, while the print time for a full size model averaged 3 hours. The definition and quality of the model was excellent, and the detail suitable for patient education. The models were printed in biodegradable thermoplastics, and materials cost for a full size model averaged $6.25.
While the use of 3D printing in health care has been limited, it provides an exciting avenue for expedited production of patient-specific educational tools. Previous methods for printing have utilized industry-specific computer programs to extract data from CT and MRI imaging, as well as industrial quality printing. By modification of existing open-source programs and use of a low-cost printer, these models can be produced for $6.25 and with minimal labor. This method has the potential for application across multiple organ and tumor types, thus providing myriad clinicians and patients access to this innovative educational tool.
Rethinking digital design tool education for the non-traditional innovator: teaching CAD to nurses
For most of the last century, new product innovation has been limited to the realm of professional designers and engineers. With a more recent focus on end user experience and needs, clinician and patient voices have slowly been included in more of the early market research and late product testing that are critical to successful medical device development. However, the professional tools and skills used to design and fabricate the actual end product have remained firmly in the realm of technical experts. It is only in the last decade that technological advances have allowed professionals from other fields access to fabrication resources (including 3D printing) and design software for relatively low cost.
With access to these advances, it has been speculated that “anyone” has the ability to design and create their own personalized products. The overall quality, safety and ultimate impact of these theoretical devices (especially in the medical field) is a source of significant debate. However, while there has been significant debate, there has been little clear research on these “non-traditional innovators” to guide initiatives to educate and support them.
To clarify the challenges and opportunities of clinical professionals attempting to innovate in their field, a research project was initiated that studied nurses as they learned entry level Computer Aided Design (CAD) skills. The ability to capture a potential design idea in a three-dimensional computer model is an incredibly powerful skill, but the existing studies on how best to teach it are based entirely on populations of engineering college undergraduates. As part of the study, nurses were interviewed and surveyed as they participated in a digital design workshop at a professional nursing conference. Their expectations, motivations and learning outcomes were then compared to similar learning experiences completed with engineers. This work hopes to improve skill acquisition in aspiring innovators by highlighting biases in existing technical education and providing clear educational insights to support learning when crossing professional boundaries.
Development of and experience with a scalable extended clinical immersion experience for undergraduate engineering students
Jeremy Ackerman, Jorge Mena, Mary Beth Privitera, James Rains
For six years Clinical Observational Design Experience (CODE) has brought engineering students into active Emergency Departments where they discover problems in health care. This is a design course focusing nearly entirely on the discovery phase of design. Students spend 6-8 hours a week in multiple Emergency Departments where they begin to understand how health care is delivered and discover the problems faced by clinicians and patients.
Most clinical immersion programs have very limited time and limited access–essentially the students only see what their client wants them to see. In this course students see whatever happens in the Emergency Department – a place where health care covers broad ranges of demographics and clinical conditions. Extended periods of time for observation lets them understand the broader context of the problems. Collectively they see similar issues play out at different facilities and they see how the problems they identify affect different stakeholders. Extended opportunities to observe in the clinical setting enhance students’ understanding of clinical problems.
Members of the panel will include faculty who have shaped this course and who work with students on biomedical design projects before and after their clinical experience.
Flip the wait: a panel discussion on transforming the “wait” time and place into opportunities to educate, engage and prepare patients and families in order to improve the significance of the patient-provider interaction.
The idea of Flipping the Waiting Room – or Flipping the Wait – came during a Flip the Clinic Lab funded by the Robert Wood Johnson Foundation. The notion emerged twice – first in the San Fransisco Lab, and then again in the Phoenix Lab. Currently, flip #19 on the Flip the Clinic’s website investigates the idea of redesigning the clinic space itself as a way to improve the patient-clinician experience during clinical encounters. It showcases the Children’s Hospital of Pittsburgh’s success alongside other examples to illustrate how small yet significant adjustments alter the atmosphere of their clinic. Space can be a tool to transform care. In this panel we will explore how, and in particular look at how waiting can be removed from the vernacular of the hospital. What if we transform the “wait” time and place into opportunities to educate, engage and prepare patients and families in order to improve the significance of the patient-provider interaction.
Ideas discussed will be supported by the results of a nationwide poll by the Center for Advanced Design Research and Evaluation (CADRE), including diverse voices from millennials, baby boomers and physicians.
We will get multiple perspectives from people working across the health care space to inform how we might Flip the Wait. Panelist perspectives will include research, architecture and space planning and process and purpose design. A health care consultant, design researcher and patient will form the panel. The session will be an interactive one where innovative process and place concepts to flip the wait will be shared. The session will be moderated by a communications expert who will guide this ideation session where we will solicit information from the audience to brainstorm different ways we can remove “wait” from our current understanding of how a hospital system works. Our desired outcomes are to better understand the context of a flip, and to co-create a concept for flipping the wait in outpatient care.
Design thinking inside out
Kirsten Ostherr, Jay Baruch, Joyce Lee, Bon Ku, Matthew Trowbridge
This panel of experienced design thinkers will discuss how and why they work to bring design practices to health care settings. As stakeholders working from inside of their institutions to bring the “outside” practice of design thinking into the curriculum, these panelists will share with the Medicine X audience their views on why it is so radical and necessary to bring creative problem solving into medical education. Panelists will explain what they have seen come out of these experiments that is so unique, valuable, and currently absent from medical education. What if design thinking were considered a required clinical competency? What new kinds of doctors might emerge? How might those doctors engage differently with their patients? How might those doctors engage differently with the many challenges of the health care system?
Panelists will describe their experiments to address existing problems in medical training settings through collaborative, participatory design. An important part of this discussion is the issue of gaining acceptance of novel techniques within medical training. As Tim Brown recently argued in Harvard Business Review, design thinking needs to move beyond only focusing on designing perfect “artifacts” (products, services, etc.) and begin designing systems that facilitate acceptance of innovative approaches within complex organizations. For the “Design Thinking Inside Out” session, Brown’s insight will translate into a discussion of how to cultivate future health care leaders who possess the skills and appreciation for employing a patient-centered perspective within their organizations.
The panel will include a robust discussion of how each of the panelists is working to get human centered design training integrated into medical schools, with the goal of providing some strategies to the Medicine X community to hear and comment on. Finally, each panelist will briefly present an artifact or tool that we have created, so that Medicine X audience members will have tangible ideas to implement when they return to their institutions.
All of the participants on this proposed panel are experienced, effective presenters, who are widely recognized for their innovative work in bringing design thinking to medicine. This panel promises to inspire the audience by not only describing the exciting possibilities of “Design Thinking Inside Out,” but also by demonstrating with concrete examples that these novel approaches to training medical professionals can be successfully implemented in a wide range of settings. By coupling our personal stories of challenges overcome with a group discussion of why medicine needs to embrace design thinking now, this panel will offer the resources and ideas to encourage audience members to develop innovative programs at their own institutions.
Redesigning the emergency medical response – the doctor and paramedic will see you now
Peter Antevy, MD
Eighty percent of Medicare dollars are the used by the sickest 20% of patients. Frequent emergency department visits along with re-admissions cost the government and hospitals hundreds of millions of dollars each year. Healthcare, technology and the changing face of medicine have led many to solve this difficult problem. We have re-designed the emergency response to the chronically ill patient by developing a technology platform that alerts a data center even before the patient is clinically at risk. Patients are also given instant access to assistance with a tablet that connects them right into dispatch. The paramedic dispatcher triages the patient, connects into the patient’s physician and then has the option to send a community paramedic to the patients residence. A full evaluation is completed including a survey of the home, vital signs, EKG and blood work. The physician is then included via HIPAA secure video teleconference and can order complex interventions to be performed on site. To date we have responded to 160 acutely ill patients and only 20 have required transport. Realized savings have been in excess of $600,000 and we are now ready to scale.
Enhancing the reach of mental health care practice through user-centered mobile toolkits
Courtney Crooks, PhD
Civilian and military communities are at significantly high risk for suicidal behavior. While emergency department or inpatient treatment is critical following a suicide attempt, people are still at high risk after discharge from these settings. ReliefLink (RL) mobile app was developed as a free, user-centered mobile health (mhealth) tool, through a competitive grant from the 2013 Suicide Prevention: Continuity of Care and Follow-up App Challenge (SAMHSA). RL provides information links to follow-up care, and includes an emergency 911 alert, appointment reminders, mood rating, GPS-enabled locations of nearby services, tweet alerts, and coping activities. We plan to apply strengths-based and socioeconomic models to suicide prevention and assess RL in communities with known heightened risk for suicidal behavior, focusing on development of intrinsic and extrinsic resources. We hope to integrate viable and effective, value-added features of RL with other mobile tools such as the Virtual Hope Box and Caring Letters, toward a comprehensive toolkit for enhancement of mental health care.
Designing for good patient decisions: bringing together data, psychology, and human-centered design to help breast cancer survivors choose a method of post-treatment surveillance
Mammograms are the standard for post-treatment surveillance of breast cancer patients, but the use of MRI is rising due to doctors and women developing anecdotal experience through peers and through its usage in other processes like diagnosis. Few data are available to guide decisions about which method is more effective for individual patients, and many patients are unaware of the important implications of their choice on their time, money, stress, and comfort. Group Health Research Institute (GHRI) and Artefact are working to help fill this important gap by bringing together the first large-scale data analysis of MRI and mammography to support clinical decisions and developing an interactive decision-support system with individually calculated patient results. In this panel discussion, together with GHRI, we will share lessons learned, design principles and behavioral economics strategies that we have deployed to create a platform that can empower more effective and confident decision-making by breast cancer patients.
Information technology as a tool to engage and demystify cancer in children and adolescents
Technological evolution, equipment modernization and internet accessibility are contributing to the increase of Information Technology, especially in the oncology area, where patients and family members are eager for information.
However, the exponential growth in the amount of information does not guarantee the quality and responsiveness of it, highlighting the inadequacy and inappropriateness of information as a cause of fear, insecurity and even lack of commitment to treatment.
This study aims to inform the current situation of renowned Pediatric Oncology Hospitals websites.
Ten websites were analyzed in Normative Descriptive Model.
The Descriptive Model contemplates the existence and specificity of the areas: Lexi-Visual content, organic search and advanced search. (Yes/No)
The Normative Model was based on principles and heuristics proposed by Ergonomics Areas, Human-Computer Interaction and Information Design: information structure, simplicity, clarity, unity, usability and accessibility. (Appropriate/Partially Appropriate/Inappropriate)
Twenty percent of the evaluated websites do not have any information. Twenty-five percent of the websites that have information do not have search. Thirty-five percent of the websites do not comply with usability principles. A hundred percent do not comply with accessibility principles. None of the analyzed sites comply with the adequacy of the Normative Model.
The increase in the search for information is a natural trend of Information Technology advancement. Whereas cancer patients are more likely to be involved in the treatment of other chronic disease groups (The Center for Studying Health System Change, 2010), there is the need to improve the websites of Pediatric Oncology Hospitals.
The appropriate production of information facilitates learning, providing greater identification, understanding, and ensuring the message quality. All Information Technology resources should have as its main goal to assist the understanding of treatment, which is assumed to be humanized and effective, meeting the needs, providing relief and improving the patient and family quality of life.
The study of an OLDU database is an untapped research resource in medicine
Patient-centered health care has seen positive results by way of physicians prescribing medications off-label. Historically, the FDA releases drugs safe for the market and strongly recommends that they be used for their respective indications. More and more, physicians are prescribing drugs off-label; “off-label use is the use of pharmaceutical drugs for an unapproved indication”. While the FDA has thorough regulations in place to approve a drug before it hits the market, the process is often expensive and time-consuming ranging from 10-15 years.
Research and innovation is the foundation of medicine, in which undoubtedly pharmaceuticals play a huge role in efficacious patient treatment. In certain scenarios, when a first line drug is not beneficial and after other options have been eliminated, physicians have reached for pharmaceuticals that are market approved albeit, may not be indicated for the purpose they are being used for.
Trends over the past decade have shown that physicians are prescribing treatments off- label increasingly more often. Undoubtedly, off label drug use has become an alternative treatment method that has yielded both great and devastating results, and is being used more and more often. Why then, do we not monitor OLDU? An effective way to monitor OLDU statistics is vital to pharmaceutical research.
OLDU should not be viewed as simply an alternative treatment therapy, it is a widely used accepted mechanism in clinical practice and rather than disregard OLDU; it is becoming increasingly more important to monitor every time a drug is used off-label. The patients currently using these drugs for unindicated purposes are not part of phase I,II or III clinical trials, but perhaps more significantly, they are currently facing severe illnesses and have not responded to the first line therapies for their respective diseases.
Unequivocally, the analysis of drugs that are being used for alternative indications as well as, what the proposed side effects may be and which patients can benefit from this is in fact a novice form of clinical research in pharmaceuticals; the experimental study of clinically approved drugs on the market.
Specifically, in the field of Dermatology with diseases often being systemic and causing multiple symptoms, what works in one patient may not work in another. A prime example of this is in patients with skin disease vitiligo. Vitiligo is a lack of pigmentation caused by defective melatonin. Currently, the topical ointment Protopic is not indicated as a first line treatment for vitiligo, it is in fact indicated for eczema. However, when prescribed off-label, tacrolimus ointment has shown great results in patients, including myself, and yet, even today; there are patients for whom various other first line treatments have been ineffective and their physicians are not provided with this option.
Undeniably, the study of OLDU is an untapped resource in research and medicine.
Machine learning for personalized mobile health interventions
Mobile health (mHealth) is a fast emerging technology with a huge potential to reach underserved populations in both developing as well as developed countries. Realizing this potential needs a multidisciplinary approach where design, behavioral science, machine learning, and statistics experts work together in teams with a patient-centered focus. I will highlight the role that machine learning and statistics can play to address a fundamental issue in mHealth: personalizing treatment to the needs of particular individuals in specific contexts. I will also describe HeartSteps, a 5 year long NHLBI funded project to build an mHealth intervention that targets physical activity maintenance in patients after cardiac rehab.
Design for change: EPIC pillars for persuasive design for health
What makes technology truly empathic? How to develop designs that matter?
We introduce the EPIC for change model for persuasive and empathic designs. EPIC stands for:
- Engagement: Creating experience, flow using persuasive strategies and triggers in development, using positive psychology concepts.
- Personalization: How to personalize technologies to various user profiles and usage context (e.g. location, current activity)?
- Integration: How to create technologies that are implementable in practice and environments, and adaptable to people?
- Connectivity: How to develop social networks for self-organizing communities?
- Change: Refers to individuals, communities, and society; creating smart environments with persuasive technology for solving societal challenges.
This EPIC model grounds the design of persuasive technology for complex health care situations.
Case study: safety first, dilemmas in zoonotic outbreak management.
Animal-human, or zoonotic, transmission of communicable diseases carries considerable economic and public health burdens that could increase exponentially as antimicrobial resistance grows worldwide and new zoonoses emerge. At least 60% of all human diseases and 75% of all emerging infectious diseases in the past six decades were caused by zoonotic pathogens. Currently professionals are not supported in dealing with zoonotic outbreaks or in prevention of outbreaks in high-risk environments. Therefore, we developed a game-based educational environment, eZoon, to: (1) support risk communication of professionals in decision making for infection control, and (2) to enhance their skills to communicate with patients and the general public in an emphatic way.
The theoretical foundation for the design and implementation of eZoon rests solidly in the holistic CeHRes-Roadmap that integrates the EPIC concepts. Starting with a contextual inquiry and value specification, functional requirements are documented using Volere templates. A working prototype of eZoon is currently being designed, following empathic design as emphasized by IDEO. This is an iterative process, in co-creation with end-users and stakeholders to create trust and engagement. To attune the information to different users, personas and use-case scenarios are developed based on the contextual inquiry results to serve as a linking pin in the design process and to support the agile development process. Within the game, users will be asked what to do during an outbreak, what they think the implications of their decisions are, and how to communicate with patients / the general public to create awareness and to support self-care. While playing, a smart algorithm evaluates the players’ learning progress and provides, personalized, real time feedback to stimulate both reflection-in-action while playing the game and reflection on-action after playing the game.
Pocket travel (health) agent: user-centered apps to keep you well abroad
Increasingly, travelers turn to mobile sources for travel health information and guidance. Although the Centers for Disease Control and Prevention (CDC) Travelers’ Health website offers a wealth of information, it is not portable and cannot be accessed without a data connection. Travelers’ Health frequently receives public inquiries requesting information that is more interactive, personalized, and can be used on the go. In response, the Travelers’ Health Communication and Education Team has designed two mobile apps for iOS and Android devices: “TravWell” and “Can I Eat This?” These free apps, which underwent user experience (UX) testing before their release, have been downloaded thousands of times from the GooglePlay and iTunes app stores and have received positive reviews from the public and press.
“Can I Eat This?” asks a few simple questions, guided by colorful photographs, and advises the user whether a given food or beverage item is likely to be safe, risky, or questionable. It can be used entirely offline so travelers can use it on the spot in foreign countries without needing an international data plan. To the best of our knowledge, it is the only mobile app available designed to help international travelers make safer food and beverage choices. As one reviewer noted, “I won’t eat anything in a foreign country without checking this app.”
TravWell translates CDC travel health guidance into a mobile format that is customizable and interactive. It allows the user to build a trip itinerary that offers destination-specific features:
- Vaccine and medication recommendations and reminders
- Customizable packing list
- Customizable to-do list for healthy travel planning
- Storage space for copies of health-related travel documents (e.g., yellow fever vaccine certificate, prescriptions)
- Links to current travel health notices
- Emergency services phone numbers for each destination and links to Department of State safety and security information
The CDC Travelers’ Health website offers even more detailed, destination-specific information and recommendations, with separate portals tailored to health care providers and to the public. The site also contains many downloadable infographics, posters, and other materials on topics ranging from bug bite prevention to road safety. The Yellow Book – available online, as a hardback book, or as a mobile app – is a comprehensive guide for clinicians preparing patients for international travel. Our Communication and Education Team will demonstrate the functionality of all these tools and discuss the rationale behind their design.
Stop Talking over Me and Listen!
In a 2010 report, The Joint Commission identified communication as the top contributing factor to medical error. The Joint Commission implemented the National Patient Safety Goals that include: improved communication effectiveness among caregivers (http://www.jointcommission.org). Ineffective communication was cited as the most frequent root cause of sentinel events. The Joint Commission recommends communication that is timely, accurate, completely unambiguous, and understood by the recipient. The goal is that these improvements will reduce error and result in improved patient safety.
Communication failures affect patient safety and clinical outcomes. Reasons for communication breakdown in the operating room may be attributed to the power structure and microaggression within operating room teams. A group of Stanford physicians and students from across the campus performed and analyzed methods-conducted interviews in an IRB-exempt protocol to elucidate reasons for communication breakdown. We interviewed surgeons, anesthesiologists, resident physicians, medical students, nurses, and scrub technicians. However, we overlooked the focal point of the medical team’s efforts – the “end users”, the patients! We are in the midst of correcting this misstep but this omission made us mindful of the existence of an entire OR ecosystem of people, all of whom influence the communication paradigm and ultimate patient outcome.
In this interactive workshop, we plan to explore the communication paradigm that currently exists in the operating room through the lens of “design thinking”.
Most design thinking workshops focus on either an abbreviated design process or a piece of the design process, usually “empathy”, the first and primary component. In this workshop we will assist with the empathy component via aggregate personas from the aforementioned interviews, ensuring that all voices are heard. We will then ask participants to:
- validate the personas (and amend as needed)
- ideate on ways that communication can be made more effective
The design thinking tools we will use during the workshop will include:
- Journey Mapping of the personas (in small groups)
- Creating a collective experience map and use “WIBNI “Wouldn’t it be nice if…” ideation to identify intervention points
- Role play and/or storyboard intervention points to ideate solutions
These tools, along with the interactive nature of the workshop, will allow participants to learn and apply the principles of design-thinking to a real-world problem within a creative and safe environment.
Lessons learned from this workshop will assist us in the development of a curriculum focused on strategic communication in the operating room targeting health care professionals.
Design Thinking tools and methods for transforming health care
A stimulating, hands-on, crash-course into the tools and processes of Design Thinking.
Design Thinking is a proven mindset and methodology for innovation and problem solving that has been deployed by leading organizations around the world for generating effective, human-centered solutions to complex, systemic problems. With its laser focus on meeting the needs of end-users, health care organizations such as Stanford, the Mayo Clinic, and Kaiser Permanente are using Design Thinking to bring together the voices of patients, their families and clinicians to envision new health care delivery models, stimulate a culture of learning at the frontline, improve safety and clinical care outcomes, and enhance the patient-provider experience.
Over the course of this focussed workshop, participants will discover design methods for:
- developing empathy with end-users for fostering a rich understanding of the problem space,
- translating qualitative research data into defined opportunities for design and improvement,
- generating high quality ideas in collaboration with patients, their families, and clinicians, and
- how to use rapid prototyping to bring ideas to life.
Participants will leave inspired and equipped with a powerful toolbox of methods they can use in their organizations for partnering with patients, their families, and clinicians for transforming health care.
Human-centered design for quality of life in cancer care
Kavitha Ramchandran, Erika Tribett
Care for people experiencing chronic and serious illness should focus as much on quality of life as on the treatment of disease. However, the current system is not designed to address these needs. Further, what does “quality of life” mean for patients, families and providers? How do we equip our health care teams, our system, and families with the tools to assess and support quality of life? Our team is focusing on tailoring and applying a clear set of tools from palliative care (PC) to general practice so we might treat the whole person and improve a range of outcomes. We are utilizing human-centered design methods to rebrand PC (from an end of life service) and develop novel interventions that bring quality of life central to cancer care.
Our data collection to date has revealed need for improvements in:
- protocols and role definition for addressing patient distress,
- resources and tools to address needs,
- clinician education in palliative skills such as communication, symptom management and identifying patient goals,
- relationship-building to encourage interdisciplinary care,
- feedback mechanisms to track impact on quality of life and other outcomes over time.
In 2015, we convened a multidisciplinary group of 25 patients, family members, oncology clinicians and experts in patient experience and health services research to evaluate current data and generate ideas for optimizing support for symptom management and quality of life. Several themes were generated from the workshop and the group was engaged in small groups to work on pilot projects in these areas. Proposed solutions, such as a subspecialist “hub” that allows single referrals and streamlined access to supportive care, began testing and iteration at the Stanford Cancer Center in June 2015.
During this workshop, participants will have the opportunity to utilize a rapid design process to explore and create for a specific theme around quality of life that we heard through work with patients and families. Together, we will discuss this theme and the cancer care experience. In small groups, participants will identify root causes and generate ideas to address them. Groups will converge around a single prototype and map the inputs and process required to ready it for testing. They will also create potential metrics for measuring success. At the end of the workshop, participants will have worked through the design process and generated a prototype to share with a small group of stakeholders. These prototypes will inform future work to improve quality of life care for patients and families.
ePatient Presentations (35)
Time and Quality of Life
Time is a subjective measure that does not get taken into account by health care. For example, when I’m experiencing severe chronic pain flares time can slow down to forever in a second. When I’m experiencing the joys of life my concept of time is probably equivalent to a healthy person. However, I can go skiing (many considering this a joys of life sport) but still be experiencing a painful slow down of time due to any number of reasons associated with being a patient. Patient time is not related to a situation or activity as many may think, patient time is very much a subjective concept.
For example, in June of 2003 I fell rock climbing.
2 second fall / 86,400 seconds in a day = .00231481% of the day.
A event that was significantly less than 1% of one day in my life has led me to become a Stanford University epatient advisor for the Medicine X Conference and one of the reason’s I’m submitting an abstract today. My fall could also be another patient waiting 2 weeks to visit a doctor because of a pain level of 8. Both events are powerful moments in our own patient lives but in the grand scheme of life not statistically significant conventional time measurements. In my particular case, that was a powerful 2 seconds that does not fall into any conventional time definition, I would argue.
In order to better bridge this subjective measurement of time, I am proposing that we turn the traditional pain scale into a time multiplier in relation to pain. I believe that asking a patient to indicate a time multiplier gives their doctor a better sense of the patients actual pain and mental health level in relation to time and also provides health care a much needed window to start asking about a patient’s mental health. Pain and mental health are not always directly related, but they are more often than not. Currently there are too many patients who are afraid to talk about their mental health for fear of not being believed, and too many doctors are afraid to ask about their patients’ mental health because it’s not their specialty. This has to change!
The beauty of using the pain scale as a time multiplier is that it works with any unit of time. For example, let’s assume my doctor has a full, uninterrupted 15 minutes to listen to and diagnose me. I tell my doctor that for the last 3 months, since my last visit, my average daily pain has gone from a 3 to a 6. I would argue that to fully explain the last 3 months to my doctor, I would need a full 90 minutes to talk with him (15 minutes x 6 on the time multiplier = 90 minutes).
Obviously getting a full 90 minutes to talk to my doctor during a visit is both the dream and unrealistic. However, by understanding how I’m experiencing time at that moment is a better understanding of my quality of life than just saying I’m a 8 on the pain scale. We have all stared at the clock waiting for it to move, that is more universally understood than pain.
Patient case study: my data. my research. my results. how I used my own data to create a precision medicine approach to my autoimmunity.
I love my rheumatologist. She is caring, she’s gentle, she takes the time with me to talk through any issues I need. But the problem is that the health system that she works in does not provide focused, individualized care for my specific needs. I’m ushered in, usually have to wait forever, and then given the basic drugs, blood tests and care the majority of the patients which walk into that office are given.
When I first started going to my rheumatologist, my CRP and SED rate levels were sky high! Methotrexate was shoved my way and a few months later Humira. These drugs were promised to help manage my inflammation and get my body calmed down.
Did they do that? To a certain extent. Sure, I started to feel a bit better, but they didn’t address my fatigue. My malaise. My nauseousness. My bone aching pain. My general ability to lead a normal 20-something life.
I’d go back into my appointments with my doctors and the same thing was always said. Oh you need to be more active, then you’ll feel better. Just give the meds more time, then you’ll feel better. You have autoimmune issues, you’ll probably never feel 100% better.
I knew there had to be a better way. I knew there had to be more to the story than they were telling me.
I started pouring over my own medical record. Since I was a baby, my Mom has kept a record of all my doctors appointments. I started reading over the entries – chronic ear infections, antibiotic after antibiotic, chronic migraines, test after test for stomach issues, 1 knee surgery, then another, then another, then another and another. I started seeing common themes and started thinking how there was no way all of these things WEREN’T related. The human body is AMAZING and so interconnected.
I started to look at all of these “little”, “isolated” issues as dots on a graph of my health journey. I started to be able to connect dot after dot after dot and by the end of my reading, I had so many post-it notes stuck to the pages and questions that I NEEDED to ask my doctors. I started making copies of lab results, surgery notes, doctors notes, etc and had a huge package to present to my doctors.
My rheumatologist, my pain doctor, my orthopedic, my psychiatrist, my blood doctor, my acupuncture doctor – they all seemed interested, and shocked that I had taken the time to mull over my health records like I had, but since the system isn’t really setup to help me with my precise case, they offered me a few words of encouragement and really didn’t give me much more than that.
I was on my own. I knew I had to field my own team of doctors who would be willing to work with each other, who would be willing to listen to my research and ideas, to really work on me on an individualized level.
I set out to build that dream team of doctors. As I did that, I started collecting more data on myself. How could I impact my condition, how was my body sending me signals, how could I use the data I had at my finger tips to really influence my health?
After doing research on my own, I realized that I needed to work on calming my immune system down – whatever, however that meant. I learned that 75-80% of the immune system lives in the gut, therefore I started first looking at my diet. I removed trigger foods and started doing different iterations of an elimination diet. First, looking at the common triggers, seeing how those affected me and then shifting my sights on lesser known triggers. It was amazing to me to see the foods that I was eating on a regular basis were really causing me problems! It was insane. Foods that I looked to for comfort were actually invoking an immune response in my body. I kept spreadsheets, I used phone apps and journals and tracked so much data on myself.
Then I looked at other things – supplements, detoxing from beauty products, calming my body with yoga and meditation – every and any bit helped. And came up with plan on my own for a regiment that could help me personally deal with my psoriatic arthritis.
I’ve been on this journey now for a few years, and using the data that I have, I’ve been able to get my CRP levels and SED rate down to levels that can hardly be picked up by testing. I’ve shocked every one of my doctors. I’ve come off of all of the meds I was taking (which at one time was 9 different pills and 2 different injections – one weekly and one twice a day.)
Because I felt like I didn’t have precision medicine at my disposal, I took it in my own hands to create my own precision medicine plan for myself.
It worked for me because I’m motivated, I take initiative, I WANT to live my best life. But, patients shouldn’t be left to have to fend for their own. Two patients may have the same disease, but their illnesses affect them completely different. Our health care landscape needs to be one that promotes healing on an individualized basis, not a generalized basis.
I have many different examples of data that I used to help crack the code of my autoimmunity. From my mom’s notes from when I was little, to keeping test results and surgery notes, to getting tests done and looking over them myself, to the ridiculously elaborate excel spreadsheets I kept on myself (I used to be a consultant, ok?) – there are many points that I can make about how using my own data truly helped me enhance my own health. Had I not kept my own files, tracked my own data, and been empowered to do so, I doubt I’d be in the health state I’m in today.
This presentation would talk about my health journey and how having access to my data, using my data, and fielding my “dream team” or doctor has helped me get to where I am today. My case study proves that we need precision medicine to combat these complex health issues. My main objective would be to show the Medx audience what I used to help tailor my plan, how each and every patient needs someone on their side to help them do the same and end with the thought of “How might we offer our patients this opportunity?”.
FDA advancing precision medicine with precisionFDA: a collaborative informatics community to explore regulatory science
There are many more success stories similar to Nicholas’, which have popped up over the years, where lives have been saved thanks to next-generation sequencing technology. Imagine a world where doctors have at their fingertips the information that allows them to individualize a diagnosis, treatment, or even a cure for a patient based on their genes. This is the President Obama’s vision for the Precision Medicine Initiative (2) .
Even though more than 80 million genetic variants (3) have been found in the human genome, we still don’t fully understand the role that most of these variants play in health or disease. Furthermore, the analytical validity of NGS technology for the diagnosis and treatment of disease is a nontrivial topic, and has peaked the interest of the FDA, which is working to assure the safety, efficacy and performance of genomic technology in a way that does not inhibit innovation. In order to help achieve the President’s vision, the FDA launched precisionFDA (4), a community platform for NGS assay evaluation and regulatory science exploration.
PrecisionFDA represents a novel and forward-thinking approach to regulatory science. Rather than government regulators defining upfront and then imposing a specific set of performance standards, precisionFDA instead sees the government as providing a research sandbox where the genomics community can experiment, share data and tools, collaborate, and suggest their own standards for evaluating analytical pipelines – organically and transparently.
The ultimate success of precisionFDA will of course depend upon the support and engagement from its community members. This new level of collaboration around the evaluation and performance of NGS pipelines will help to overcome the challenges of precision medicine in the 21st century.
GenomeConnect – making connections and engaging patients in genomic discovery
Technological advances in genetic testing have allowed for an increasing number of genomic variants to be discovered in the human genome. Although awareness of the relationship between genetics and health has advanced in recent years, the impact of many variants on health and disease remains unclear. Consequently, many patients and families are the first to be identified with a given genetic change and experience an “N of 1” result – the situation where causality of a genetic variant cannot be determined if it has only been seen in a single person. They are turning to social media and other web resources to try to find others with the same genetic diagnosis or researchers studying their particular genetic change. GenomeConnect, an online patient registry developed as part of the NIH-funded Clinical Genome Resource (ClinGen) project, serves as a secure way for individuals and families to connect with one another and partner with researchers.
GenomeConnect is open to anyone who has had any genetic testing, regardless of test results or diagnosis. Participation is completely online, so individuals can join from anywhere in the world. As of January 2016, the growing community currently includes 431 participants from 48 states and 21 countries. After consenting online, participants complete a health survey that collects detailed information about their health history. Participants have indicated a history of a variety of conditions including chromosome abnormalities, childhood and adult onset single gene disorders, mitochondrial conditions, and even those without a known diagnosis explaining their health history or healthy individuals who have undergone predictive, direct-to-consumer, or carrier testing. Finally, participants are asked to upload a copy of their genetic testing report and the GenomeConnect staff collects important information about any genetic variants in a standardized manner. In addition to variants in known disease causing genes, some participants have had genetic variants found in candidate genes, or genes that have not been associated with a known condition.
By enrolling in GenomeConnect, participants have the ability to connect with other individuals, clinicians, and researchers. Using the secure online portal, participants can search for others based on diagnosis, age, and other demographics. Participants also can elect to receive information about clinicians, laboratories, or researchers trying to connect with them. Individuals with variants in candidate genes also can connect through GenomeConnect’s involvement in Matchmaker Exchange, a tool for patients, clinicians, and researchers to search for genetic and phenotypic matches in an effort to determine if a genetic variant in a candidate gene is the explanation for a particular condition.
GenomeConnect also provides a means for patients to actively contribute to genomic discovery, fostering a better understanding of the relationship between genetics and disease. Collaborative efforts to encourage the sharing and public availability of genomic information have resulted in a number of clinical and research laboratories contributing genetic data to publicly available databases. Often times, however, these laboratories do not have access to critical phenotype information that could aid in interpreting these variants. After participants complete their health survey and upload their genetic testing report, their genetic and health information are prepared for de-identified data sharing with approved, public databases to facilitate interpretation of genetic variants. Overall, GenomeConnect provides a means for participants to connect with others while providing clinicians, laboratories, and researchers with genetic and health information that will allow for advances in genomic medicine. This presentation will focus on the importance of data sharing, how patients can play an integral role in data sharing efforts, and how registries such as GenomeConnect enable patients to become active partners in data sharing and genomic discovery.
Changing consumer behavior to empower them at end of life: Compassion & Choices launches the “Truth in Treatment” movement
Barbara Coombs Lee
People overwhelmingly say that they want to die at home, surrounded by loved ones. Their greatest desire is to minimize the burden of suffering that they will experience and their loved ones will witness. In consumer parlance, what they want to avoid most is to “become a vegetable” or “die in an ICU on a machine.” Most importantly, they fully expect that these desires will be met.
The reality, however, is just the opposite, with people commonly experiencing unnecessary suffering and burdensome treatments at the end of life.
The recent IOM report, Dying in America, documents this failure of medicine and points the way toward system change. But the financial and psychological incentives of medical practice present formidable hurdles to rapid change on the provider side. The good news is that leaders in the field are taking on the challenge. As Bill Novelli and Tom Koutsoumpas, Co-Chairs of the Coalition to Transform Advanced Care, say in The Roadmap For Success, “There is a path forward. [It] begins by putting patients and families first, ensuring that their values and preferences are taken into account every step of the way.”1
Compassion & Choices decided to attack the challenge from another direction. If the system needs to “put patients and families first,” what if we gave patients and families the tools they needed to put themselves first? C&C embarked on an initiative to address these problems from the consumer side of the patient/physician relationship. Working with top experts in behavior change and communication, C&C has spent over a year and more that $1 million on consumer research to develop a set of unique products and messages that will empower consumers to actively engage with their doctors in ways that simultaneously enhances the patient/doctor relationship and disrupts the status quo bias toward the “do everything” approach to end-of-life care.
Our R&D road to discovery has been anything but straightforward. While there are many tools – advanced directives, living wills, and POLSTs – and numerous communication initiatives (e.g., The Conversation Project) and even best-selling books (Being Mortal) pushing consumers and providers toward awareness and positive change, our research provided us with dramatic evidence that most of these efforts are not providing people with the right tools and messages at the right time to help them. Fortunately, our deep dive into understanding the complexity of how we humans cope with our mortality has borne fruit in a wholly new approach to consumer engagement and empowerment.
We will share with MedicineX participants the highlights of our R&D discovery journey and give them a sneak peek at the first set of products and the powerful promotional campaign we will be beta testing in Spring 2016.
Smart aging: the impact of IoT on the elderly and caregivers alike
The senior population in the United States is experiencing unprecedented growth. Since nearly 90 percent of seniors want to age in place, or stay in their own homes as they age, there is a significant need for technology solutions that can help seniors age independently. As such, health care is moving toward more coordinated, continuous health management monitored by new technology. These connected devices and mobile Internet-based technologies empower senior citizens to age independently while addressing the social, medical and functional needs of seniors and their caregivers.
In order to help improve quality of life, new technologies must provide both caregivers and patients with a simple way to communicate, generate emergency alerts and monitor medications, while still incorporating privacy and security. Ideally, these services should relieve some of the burden on caregivers while keeping seniors stay connected to relatives, caregivers, and health care providers. They should also be very easy to install and use for those with various health conditions.
People Power’s recently launched Presence Pro Care software solution helps address one of the biggest challenges in society today: a rapidly aging population with a health care system that cannot keep pace with their needs. Comprised of a hub and sensors, this solution was created to help seniors live independently while giving relatives and caregivers a better balance between caretaking and their personal lives. With the ability to monitor whether a parent or grandparent opens their pill dispenser, leaves the house or deviates from their normal routine, Presence Pro Care allows caregivers to take better care of the people they love even when they’re not present. It also helps seniors stay connected to their family members through two-way audio and video calling using the optional Presence video features, and photo sharing. With a focus on facilitating communication between people and their elderly family members and friends, this new technology will help shape connected health care and set a standard for senior living and caregiving.
David Moss, President and CTO of People Power, will discuss how connected devices empower senior citizens to age independently and how mobile Internet-based technologies, especially home monitoring, address the social, medical and functional needs of both seniors and their caregivers. He will also expand on Presence Pro Care, its benefits and differentiators, as well as why these types of technologies are necessary for the connected health care market.
By the end of this presentation, attendees will understand how to build a platform that embraces 3rd-party devices and sensors, and how the use of sensor technology can lower senior care costs. They will also understand how caregivers can leverage IoT tools to shift their focus from reactive to preventative health care, as well as criteria to empower elderly populations living in their home to have safer, richer lives.
We provide the first empirical exploration of disease-related innovation by patients and their caregivers. Our aims were to explore to what degree do patients develop innovative solutions; how many of these are unique developments; and do these solutions have positive perceived impact on the patients’ overall quality of life? In addition, we explored the factors associated with patient innovation development, and sharing of the solutions that the patients developed.
We first administered a questionnaire via telephone interviewing to a sample of 500 rare disease patients and caregivers. The solutions reported were pre-screened by the authors for their fit with the self-developed innovation aim of the study. All the reported solutions were then validated for their novelty by two medical professionals who confirmed that 8% of the solutions were indeed novel. The likelihood of patient innovation increased as the education level increased and as their perception of limitations imposed by their disease increased. There is a positive relationship between the impact of a solution on the respondents’ overall quality of life and likelihood of solution sharing.
Given that hundreds of millions of people worldwide are afflicted by rare diseases, patient and their caregivers can be a tremendous source of innovation for many who are similarly afflicted. Our findings suggest that many patients could be greatly assisted by improved diffusion of known solutions and best practices to and among patients and their caregivers.
Our results have some clear managerial implications that can result into better quality of life and health outcomes. One way to intervene and reduce the search cost is to develop a centralized inventory of patient developed solution, and online platform have been a good model for this. With this in mind, we developed Patient Innovation, www.patient-innovation.com, a non-profit international, multilingual and open platform, designed to allow patients and caregivers to show and share the innovative solutions they developed to fight their diseases, as well as to foster collaboration among patients, caregivers and others. Prestigious institutions and reputable individuals, including several Nobel Laureates, distinguished scholars and patient associations from around the world have endorsed it. In the first 20 months of operation the Patient Innovation platform collected and curated over 500 innovative solutions who are now being shared to the benefit of thousands of other patients.
Genomics research meets patients in the era of social media
As a biomedical scientist preparing to defend my PhD in biochemistry, the last place that I thought to look for information after being diagnosed with an exceedingly rare and aggressive cancer was social media. But after being told that there was no data to guide my clinical decisions and no scientific knowledge about my disease, I turned to any resource that I could find on the internet. I typed the words angiosarcoma cancer into my browser, and the series of events that followed reset the entire trajectory of my career and life’s mission to accelerate the pace of discovery in cancer research. All of which was set in motion when I stumbled upon 8 people in an online support group. Beyond the statistics which suggested that I wouldn’t live for one year were a handful of people determined to live.
Those first 8 people quickly turned into 2000, and the knowledge that we brought to our support group far outpaced the data being published in the literature. We funded research, we shared our genomic panel results and generated a conduit for people to be seen by doctors who we taught to become experts in angiosarcoma. It became clear that if I was going to make a deep impact for my very rare cancer it wasn’t going to be behind the bench. So when the time came to choose between a traditional academic tenure track position or a path less defined in the world of advocacy, I chose the latter, and joined the Broad Institute of MIT and Harvard in order to tap into the potential of social media for a direct-to-patients nationwide genomics project.
They believed that engaging patients in research would greatly accelerate the pace of discoveries. Working iteratively from conception through implementation with patients and advocates we built the Metastatic Breast Cancer Project, a nationwide genomics studies that empowers patients to contribute their tumor samples and clinical information to research. In the 3 months since launch, we have enrolled 1200 patients who have provided responses that have generated new research questions that were unanticipated. For example, we have rapidly identified large numbers of patients with rare phenotypes, which has been historically challenging using traditional research methods. We will generate a clinically annotated genomic data set and share it widely in order to contribute to our collective understanding of this disease.
As a result of our early successes, we are now building the Angiosarcoma project (ASproject). Using social media, we will engage a living cohort of patients that will far exceed those seen at any one institution in order to generate the genomic landscape of a disease that would be intractable to study through traditional methods. Ultimately, we seek to establish a broad patient-researcher partnership to accelerate genomic discoveries across multiple cancers that may serve as a means to build a new clinical and translational research infrastructure for patients with cancer.
Long-term HIV survivors: sharing hard truths
Approximately 25% of the 1.2 million US citizens living with HIV are 55 and older (CDC, 2011); many of these are long-term survivors, commonly defined as having lived for 25 years or more since their original diagnoses. These men and women lived through decades witnessing their contemporaries dying in large numbers while the medical and political establishment lagged in their response to the enormity of the epidemic. Now, as they age, they face a constellation of physical and mental health issues related both to the trauma of the epidemic and to the cumulative side effects of decades of antiretroviral medications: e.g., organ damage, neuropathy, depression, anxiety, and social isolation. While the stigma of being HIV+ has somewhat abated, a new set of pressures has arisen for those experiencing complications of long-term survival. The emergence of treatment as prevention, with its necessary emphasis on lifetime retention in care, fosters an upbeat narrative that frames treatment as being relatively benign, and with it the promise of an “AIDS-free generation.” At the same time, growing awareness of rising rates of opioid abuse in the broader population has made clinicians reluctant to prescribe medication for the chronic neuropathic pain experienced by many long-term survivors, especially when the patient has a history of substance abuse. The confluence of these factors serves to isolate long-term survivors and creates a new set of barriers for accessing effective treatment for side effects including crippling pain.
From the outset of the epidemic, communities with disproportionate burdens of HIV/AIDS have pioneered media- and technology-based approaches to influence public policy and clinical practice, as well as to offer information, empowerment and support. Early documentaries and the Names Project (AIDS quilt) insisted on visibility for the lives and stories of people living with HIV/AIDS (PLWHA). Peer-to-peer and geo-social apps connect those at risk for or living with HIV/AIDS with information, empowerment and support including treatment locations and peer ratings of caregivers. Now, innovations such as Everyone Included TM explicitly recognize the value of –and offer platforms for–patient expertise in shaping treatment decisions, and long-term survivors can play a critical role in helping providers understand the complexity of pain management in HIV care. This presentation will feature the experiences of long-term HIV survivors in seeking appropriate care. As part of a SAMSHA-funded initiative their video narratives will also be shared via social media to reach isolated peers, and as part of accredited online training for clinicians in psychiatry, psychology, social work, and primary care. The video and related training materials seek to 1) inaugurate a safe space for survivors to break out of isolation, share the elements of their experience that do not fit the larger narrative of positive survival, and participate fully in care decisions and 2) catalyze broader clinician engagement with the physical and psychosocial needs of this population. This session will feature short video outtakes and will be co-presented by Alfredo Hernandez Chavez, a long-term survivor and leading HIV activist in the Latino community. Rebecca Stoeckle, EDC Vice President and Director of Technology and Health, will offer contextual information on the challenges and opportunities of using technology and rich media to trigger and sustain changes in attitudes and practices among different clinical disciplines.
#WeAreNotWaiting – A revolution in patient-centered design
Back in 2007, noted diabetes patient, blogger and patient activist Amy Tenderich wrote an open letter to the late Steve Jobs asking him to help design better diabetes devices. Since then, she has worked hard to amplify the voice of patient needs and bring innovation to diabetes via the DiabetesMine Innovation Project activities and events. These gatherings spawned the #WeAreNotWaiting movement – the ultimate grassroots patient-led innovation initiative, which has now gone global and is expanding even beyond diabetes.
Learn how the diabetes and other disease communities are taking matters into their own hands, with examples of products and platforms being created to help patients better utilize devices and health data for improved outcomes. Examples such as increased “time in glucose range” and quality of life improvements will be discussed, as well as ways that health care providers can and should engage in this movement.
Border defying medical collaboration
Doctor- patient relationship is the foundation of a successful surgical journey. It is built on confidence, mutual understanding and of course, communication. It is about building a relationship that is truly a partnership.
We have looked at existing and secure technologies that patients use in their everyday lives to make this collaboration work for everyone. We have been utilizing networking platforms in an attempt to monitor our intestine transplant patients from a distance. We can ‘keep an eye’ on them using encrypted teleconference settings which can often be tools such as Skype, saving time and money for both sides by avoiding unnecessary commuting and utilization of office space. At the same time we achieve instant communication and therefore make a diagnosis on the spot, without wasting precious, detrimental time. In our specialist area we rely on instant, honest and open communication. That can be the difference between life and death. Data exchange is kept to the minimum required, but patient safety remains at the maximum.
At Oxford, which is one of the world’s leading intestinal transplant centres we have even changed our technique and protocol in order to enhance and support distant, patient led monitoring: New surgical techniques have been developed to greater empower the patients. We are using transplanted skin, a visible organ, embedded in a composite graft, as a dynamic canvas that can foretell a rejection in our bowel transplant patients. Now the patients look at the skin on their arm to start predicting what is happening. They then take the initiative to send us a photo in case the transplanted skin doesn’t look optimal, and get instant medical review. Patients take their care in their hands by utilizing the skin flap- an educational tool that enables self-management.
On the other hand, there are still unexplored areas in medicine and this is evident by the diverse, sometimes contradictory management seen in different departments. Surgeons thrive on evidence. In our specialist area there is an absence of unequivocal evidence mandates. Always having patient care in mind, we developed close, international, collaborations between experts in an attempt to decipher medical enigmas. Sometimes it is harder to develop an inclusive collaborative approach with doctors as it is with doctors and patients.
We, my mentoring teacher and myself, started working at the same department a few years ago, but now that we work in different countries, different continents, yet we still collaborate closely on challenging patients. Through the development of our own unique doctor and patient inclusive process we are able to take advantage of exchanging data and photos of the affected area, which means we can establish a diagnosis and define a therapeutic concept almost instantaneously. Always with the patients’ consent and always with the patients’ direct involvement in their treatment. We have built a model of care from the ground up that is based on that absolute premise of trust, relationships and a desire for everyone to share information without barriers or boundaries. Despite working thousands of miles away, we decide on the best possible treatment, which is the key to avoid a life-threatening situation. And Everyone is Included.
Our network keeps expanding. From an isolated mentor mentee relationship, we are now consulting other centres in other parts of the world as well in an attempt to give answers to daily challenges that defy borders.
How I used social media, patient advocates and my own research to regrow my femur bone.
For 3.5 years I had to use crutches everyday to get around. Why? Because I have avascular necrosis in my left femur in the knee joint. I went to doctor after doctor after doctor and every single one of them seemed to say the same thing. “I know what AVN is, I see it occasionally, but there’s nothing I can really do for you.” I was sick and tired of hearing the same theme between every “top doctor” I was seeing. They’d send me on my way with nowhere to turn, suggest I just spend the next 10 years on crutches and then, once my knee completely collapsed, get a knee replacement. No one wanted to offer me a knee replacement because of my age and because I had autoimmune issues, complex regional pain syndrome and overall was a “high risk” patient.
The advice I was receiving was unacceptable to me. UNACCEPTABLE. How could these doctors look a barely 30 year old woman in the face and offer no hope whatsoever?
I turned to the internet to try to solve my problem. I started a facebook page which now has over 1,600 AVN patients sharing stories. I found personal journey blogs, although there were only a few, which offered a few insights that I had not been given before.
Everyone always told me that it was idiopathic. I never believed them. Bone doesn’t just DIE! Every single doctor I had was ok with that answer, but I wasn’t. I was determined to figure out WHY I had AVN? Why was I so determined? Because as soon as I started talking to other patients, they not only suffered from AVN in one joint, but in several. Their knees were affected, their hips, their shoulders, their jaw. Why was that? Because they never addressed the underlying root cause.
Through my own research, and coming across a blog someone else had started, I found a doctor in Cincinnati who did extensive blood testing to figure out what the root cause was. I immediately felt hopeful! Although this doctor was a bit older, he was accessible through email and worked with people virtually. I only live about 5 hours away from Cincinnati, so my Dad and I actually drove out to see him. After 23 vials of blood were analyzed, he identified that I had a mutation on my prothrombin gene that made me more prone to clotting. Therefore, he could conclude that my blood had clot, cut off the blood supply to my knee and the result was dead bone.
At that time, I had 2 parts of my femur that had died. He said that had I found him earlier, he probably could have solved both portions, but because the larger part had started to collapse, he wasn’t sure if he could save it. The Doctor put me on blood thinner injections – twice a day for 6 months – and the hope was that the blood would thin, it would flush into the dead parts and the cells would start to revive. Some of the bone cells were probably dead, but others may have only been dying off and could possibly be saved.
After 6 months, and an MRI scan, the smaller section of my bone had revived! It didn’t even show up on my MRI scan! I WAS SO EXCITED! The next course of action was to continue to treat my blood clotting condition with blood thinners and the hope was eventually the larger part would become more stable that I wouldn’t have to worry about it collapsing.
The problem was, I was still in pain. I still needed my crutches. I still wasn’t getting back to the life I should have been living.
So, I went back to searching. If you look at AVN treatments, there are NUMEROUS ways that people address it. Unfortunately, there are numerous ways because there isn’t one sure fire way. I kept looking. My regular orthopedic avenues had failed me before, so I tried different ways of thinking.
I went to one orthopedic who seemed to think that completely cutting my femur bone in half, resetting the bone and keeping me in a brace to allow it to heal would help my problem.
I went to another doctor who wanted to inject me with placenta injections from Chinese women overseas.
I went to another doctor who offered me tubes of stem cells from other sources, not from my own body.
I went to another doctor who suggested PRP, platelet rich plasma, injections to help promote healing in the bone.
There was NO way I was cutting my bone in half to have it reset and there was no way I was having random asian placenta cells injected into my body which was already fighting itself.
But it started making me think. The mechanism behind the placenta injections and stem cell injections was the hope that the stem cells would help promote bone growth. And the thought behind PRP was to create an environment that was more conducive to healing. So, what if I found a solution that injected me with PRP and then I went and received stem cells – would that help grow my bone? If I was to get stem cells, I would want my own (my own research had concluded) so I knew I needed more information.
Because I’d become a master at thinking through my own issues, since no one else was helping me, and since I had become a pretty awesome detective on mining data online, I started searching. And guess what, I came across a procedure that I had no idea was in existence. A procedure which used stem cells and PRP to help patients avoid orthopedic surgeries. Upon spending the time to read every word on every single page of their site, I got to the doctor search. I figured there was NO WAY there was a doctor in my area, but I figured it was worth a shot. I typed in my zipcode, hit enter and BOOM – up popped a doctor right in my area. I started to cry. Why had nobody mentioned this to me before? I had literally seen every doctor in the tri-state area, no one offered me advice, no one offered me solutions, no one offered me hope.
I filled out the application right away and submitted it. This was my answer. I knew it.
After meeting with the doctors in Pittsburgh, I realized that I would need to travel to get my procedure done, but that the Regenexx procedure was definitely going to be my fix.
Because I knew there were so many others like me struggling to find the answers to their AVN problems, I made SURE to blog about every detail of my journey. I have a page dedicated to it on my site.
I can’t tell you how many patients I have reach out to me to find out more info about the procedure. This past december the clinic who does the stem cell procedures came out ot Pittsburgh and created a video about my experience.
Had I not been an empowered patient and did my own research, had other patients not been sharing their journeys online, had I not tried to think through every single possible scenario and situation I could possibly think of . . . I may have never found my solution.
March 2015 I received my Regenexx stem cell and PRP procedure in Colorado. So far, my bone has regenerated 40% (as of my MRI in September and I’ll get another one in March 2016). It’s regenerated in a way that has solidified the structure and I no longer have to constantly worry that my bone is going to completely collapse at any second. I walk without crutches. I walk without pain. I get tears in my eyes everytime I walk up steps and don’t have to hold onto the railing, and relish in the basic fact that I CAN walk up steps.
I’m actually in talks today to start working for the clinic to help their marketing efforts and to help them embrace the patient voice. The reason I found out about this procedure was from other patients and from me doing my own research. I WANT to help other patients find this procedure a lot easier and with a lot less frustration than I did.
If I hadn’t been an advocate for my health, if I hadn’t embraced technology, and if I hadn’t believe in my heart there was a solution, I’d still be on crutches, I’d still be on a ton of pain killers, I’d still be missing out on life.
Fixing health information for ePatients and beyond
5% of all search is for health information. Google is now providing better information “ready made” when searching health information. Yet finding the proverbial needle in the haystack of millions of search result is still woefully inadequate. In recently published research at McGill University, 5 patterns of information seeking patterns for cancer patients have emerged. As it turns out, over 60% of the population are not fully satisfied with what they get in terms of health information – especially when coping with a serious or chronic illness. That’s a huge problem. What’s wrong with health information? How can it be fixed? Where are we going in this regard? The speaker will share insights gained from this groundbreaking research as well as his personal experience both as a caregiver and an entrepreneur trying to transform health information to be the experience it should become. Additionally, key insights about the topic from a recent worldwide tweetchat comprised of patients, patient advocates, doctors and other medical professionals will be shared.
Revolutionizing health: Personal omics becoming a clinical reality
Around 80% of chronic disease could be avoided through efficient preventative medicine. Yet, the fact remains that it is easier to sell someone a painkiller or a pill that treats a disease than it is to sell a vitamin or a lifestyle change to prevent that disease. Additionally, our culture and education have not been traditionally focused on prevention, the medical system and the health care industry have followed that lead, investing mostly in the production of drugs and treatments.
Today, however, two new emerging trends produce a paradigm shift from traditional medicine focused on disease and treatment towards medicine focused on health, prevention and, when needed, a personalized treatment:
1) the new medical technologies make prevention scientific, personalized and accessible: we can perform deep molecular diagnosis with a personal biomarker map, and we can create a “personal health blueprint” that is based on an integrated omics profile, microbiome and other phenotypic data;
2) increasing patients’ & health consumers’ demands for “empowerment”, the desire to have more control over their health and be pro-active, which is noticed from a constant growth of using health trackers and sensors. This precious data become a digital biomarker when it is put in a clinical context, with other biological information.
Although several barriers still exist, the way is open for a new kind of medicine: data-driven, personalized, accessible, digitized, and importantly, caring and empathic.
This is why we created Omixy.
Omixy is a health care provider founded on the notion of “Healthcare on demand, personalized for you.” Our company (https://www.omixy.com/) emphasizes genomics, metabolomics, microbiome, and telemedicine to create holistic health-oriented services. Omixy’s goal is to bring personalized medicine into the daily lives of all people through our platform and mobile app. Omixy offers on-demand, complete medical check-ups, WGS (Whole Genome Sequencing), microbiome sequencing, and metabolomics analysis together with several other types of phenotypic data, with longitudinal and dynamic follow-up.
Our comprehensive report covers a complete panel of clinical blood data-set, metabolomic, gut microbiome and genome analysis for the actionable diseases and pharmacogenomics. We are actively developing algorithms to integrate and correlate clinical variables and a panel of genetic variants, involved in phenotypes or pathways, to develop predictive tools for health outcomes.
At Omixy, we start at “Health” and use omics to predict, identify and most of all prevent the potential risk of a “disease” before the clinical onset of symptoms. If disease is already present, by using the same approach and looking at a molecular level of the organism combined with pharmacogenomics and with a longitudinal dynamic profiling, we believe we can provide truly personalized health care, helping both patients and specialists.
From Diagnosis to Function – The ICanFunction International Partnership
Olaf Kraus de Camargo
The paradigm shift in health care in the last 20 years is characterized by an increase of chronic health conditions. Those usually present as a spectrum of limitations of functioning modified by the interactions between persons and environment (physical and social).
The World Health Organization (WHO) provides a framework to describe and classify such variability among individuals with the International Classification of Functioning, Disability and Health (ICF).
Currently there is no user-friendly and cost efficient method in social and health care systems to comprehensively collect and monitor a person’s functional and contextual health-related data using ICF or any other structural framework by the patient or their caregivers. To address the needs for universal health coverage and patient-centeredness, an easy to use, mobile based version of the ICF – mobile ICanFunction app (mICF) – is proposed to facilitate patient-driven and -owned data, and interprofessional holistic care by addressing the needs of service users through shared decision-making and patient-reported outcome measures. mICF could facilitate the dawn of a new era of universally affordable, accessible, personalized, predictive, sustainable, integrated, community-based interprofessional and transprofessional health care.
We represent an international partnership with 284 collaborators (professionals and ePatients) from 39 countries engaged in developing the mICF – ICanFunction platform that will enable citizens to build their own functional profiles based on the taxonomy of the ICF.
It is envisaged that mICF will:
- ensure accurate, efficient and standardized capture of functional status and contextual information, thereby facilitate the systemic understanding of health by service users and frontline service providers,
- convey information securely between different service settings, improving effective communication between service providers and/or users,
- facilitate shared decision-making for intervention (including prevention and prediction) by making person-driven and patient-owned data readily available and by defining meaningful goals and outcomes,
- facilitate administration and reporting through the aggregation of data, and
- minimize the need for repeat data collection.
In 2015 we received funding for a first prototype of our application through the Finnish Social Insurance Institution. By demonstration and live discussion with ePatients we hope to engage partners and sponsors worldwide to join our efforts to provide personalized health care based on function increasing social participation.
Progether – Fight prostate cancer with your knowledge. The global health network.
I am Roger. At age 40 I was diagnosed with prostate cancer. The prostate cancer diagnosis was a shock. How can I manage my cancer, and what would be the the right treatment for me?
I consider knowledge the key to all good decisions – And to gain knowledge I consulted several doctors …talked to other men with prostate cancer… and spent days searching the internet for answers,
And what I learned, is that there are many different types of prostate cancer. From slow growing, not harming you for decades,… to highly aggressive and life threatening tumors. and I got confused by the large number of treatment options available, some which can result in unpleasant side effects. I felt lost… Which exact type of prostate cancer do I have? And what would be the right treatment for me?
Every year, almost one million men who are diagnosed with prostate cancer, will face this problem. At the same time, 10 million men who have been diagnosed in the past, are still alive. There are thousands of men matching exactly my specific diagnosis.
If I knew which therapies worked best for them, and which side effects they experienced, … I would be more comfortable making decision about my own disease. But how could I get this collective knowledge from men sharing my type of prostate cancer?
Together with leading prostate cancer experts, patient groups and technologists we have built Progether. Progether is a patient service enabling you to enter data about your specific prostate cancer, such as diagnostic findings, treatments, and course of disease, as well as self assessment of side effects and your experience. Using this croud-sourced knowledge, with datapoints from thousands of patients, and advanced analytics, Progether will find all other men in your situation, and tell you which treatment strategy they have chosen and which experience they have had. Based on your data, Progether will also provide educational content tailored to your exact condition, empowering you as a patient.
This way, Progether enables you to learn from the experience of all other men sharing your disease parameters…while at the same time contribute to a global database of unique and accumulated knowledge, which will be made available for research to improve prostate cancer treatment.
Set me free: The power of technology on the patient experience
When I was a 16-year-old high school senior, my life took a sudden, drastic turn. I suffered a near fatal heart attack and leg amputation, and later became a heart transplant recipient and two-time cancer survivor. As a health care professional, a national patient spokesperson, and a patient health advocate, I’ve seen both sides of the patient experience. I’ve found one of the hardest aspects of being a patient is the loss of control. Your schedule, your treatment regiment, and your life as you knew it is no longer your own, or at least how it feels at first. Having access to technology transformed my experience by connecting me with others and enabling me to define life on my own terms.
There were three forms of technology that had a major impact on my experience. The Heartmate LVAD (Left Ventricular Assist Device), a then-experimental implanted heart pump that kept me alive via battery power, enabled me to return to school after six weeks instead of waiting for months in the hospital like many other patients. My prosthetic leg empowered me to be active and mobile, to exercise and keep my body in good shape while I waited with hope for a heart transplant. I sang on top of a desk in my school musical, went on a choir trip to Disney World, and danced the night away when I was named prom queen. The internet kept me connected with high school friends and new friends from college as they followed my wait for a transplant. It became a powerful tool for advocacy when I became a national guest blogger for organizations like Leukemia & Lymphoma Society, I Had Cancer, and Cancer Care. And it connected me with my heart donor’s best friend, who finally found closure after the passing of her friend. As a professional in the organ donation field, I can also discuss ways that I’ve used the internet to facilitate discussions with donors, transplant recipients, and patients on the waiting list. For my Stanford Medicine X presentation, I will cover some of these areas.
Technology can offer mobility and freedom that allows patients like me to reclaim their lives. It inspires patients by giving us access to others’ stories and helps us realize we’re not alone. It allows us to stay engaged within our own networks even when we can’t be physically present, and to make valuable connections through communities of support that can extend across the world. I would love the opportunity to share my story with the Stanford X community in hopes that it will show other patients how embracing technology can enhance their own lives, and inspire health professionals about ways that they can help facilitate access to technology and empower their own patients in this way.
Blog Rx: How writing online transforms disease
Five years ago, at the age of 30, I entered a diagnostic process for a rare liver disorder, Autoimmune Hepatitis with cirrhosis. This experience lead me to return to graduate school in Somatic Counseling Psychology, wanting to support clients and clinicians around life-altering medical setbacks.
For this presentation I am most curious about the question, as both a patient and clinician, of how do technology and creativity support the next stage of potential in medical healing? Many interventions have created layers of healing for me, from the initial trauma, through grieving identity, reconstructing cellular resilience with medication, reframing my perspective psychologically, and many more. As survivors of life-threatening medical setbacks we go through many stages. One of those areas of focus tends to be to create meaning around our experiences, in an effort to be with the uncomfortable and the existential questions of why me, why this, why now… what is this disease teaching me? Additionally, like some others, I have a desire to effectively self-disclose in community, to support self-healing as well as to gain the feeling that someone else can learn and grow from my experience of illness and recovery. The platform most relevant to my life today, five years from my initial, yet chronic, diagnosis, is my most recent expedition: blogging.
A partnership focused on what we have rather than what we need
“The terror of sickness and old age is not merely the terror of the losses one is forced to endure, but also the terror of isolation. As people become aware of the finitude of their life, they do not ask for much; they do not seek more riches; they do not seek more power; they only ask to be permitted, in as much as possible, to keep shaping the story of their life in the world. To make choices and sustain connections to others according to their own priorities.”
“According to our own priorities…”
This entire quote, and this piece of it specifically, from the book Being Mortal by Dr Atul Gawande, sum up the fundamental goal of being a patient with a chronic illness. This abstract will serve to highlight the value of and opportunity for allowing people living with chronic illness to shape the stories of our lives according to our own priorities.
Having never lived with a chronic illness prior to our son joining our family 6 years ago, we are making up our future out of our very imagination, both him and also me as his primary caregiver. We don’t know what you’re suppose to do and how you’re suppose to act, but we do know that we do not fit into the box that we are being forced into by textbooks and organizations and insurance companies. While we need to realize that there is some control that he/we must relinquish due to the simple nature of cystic fibrosis, the power struggle for leadership and ownership of our disease management is simply not productive or sustainable. Partnership is necessary.
In a fascinating TED talk by Angela Blanchard, she highlights how we, as a society, as people wanting to help, are trained to look at the problems – the lacks, gaps, needs, wants – the broken stuff. She suggests that perhaps instead of looking at all that people don’t have, we should start to look at what they do. If I can apply what Angela Blanchard says about society to health care, I think she is exactly right. I believe the answer lies in our ability as a team – patient and clinician, parent and child – to share what we have, and build what we can, to find what we need. What if we can’t see the solution by just looking at the problem. It is about partnership, but a different kind. A partnership focused on what we each have.
All stories matter. We patients and caregivers want to tell you what we can do and what we do know and that’s the first step on my path to a new story. This gives us hope, meaning, a sense of belonging. I think about the longstanding impact of improved partnership, and how that might contribute to successful transitions, adherence, sustainability, wellness. When chronic illness shows up in our lives and takes away some of our freedom, we truly are left trying to create a life out of only our imagination.
The #AskMeAboutMyUterus campaign started very simply: I wanted to talk about periods. And I wanted to talk about them a lot. It started with just live-tweeting period symptoms, but now it’s evolved into a discourse on women’s health beyond menstruation.
I partnered with Medium.com, an online blogging platform I’ve been on since their inception about three years ago, to create a publication for the campaign. It was featured on Medium’s homepage and within the first two weeks has almost 500 followers. Clearly it addressed a need in the blogging community, as women all over the world have emailed me to share their stories.
The hashtag is traceable on both Medium and Twitter, and it provides a place for the conversation to continue after the pieces have been published. It makes it easy for women to submit their experiences to me, to connect if they’re interested in being interviewed, or to just live-tweet their cycles to an audience of supportive women.
The online climate around menstrual destigmatization is abuzz; and not just within women’s publications: The Guardian wrote about how damaging this taboo is for women and they also were one of the first to report on one company’s new policy around sick days for women on their period. The Washington Post also wondered why it is that women seem hesitant to discuss their periods. And several major media outlets picked up on Quartz’ story on how period pain can be as bad as a heart attack, yet it isn’t taken seriously by medical professionals.
#AskMeAboutMyUterus is just one voice in the fray, but it’s one that is first and foremost creating a safe space for conversation. Pain can be isolating for anyone, but especially for women. The “gender gap” in pain treatment is scientifically vetted, so how can we address this and in doing so, inspire change?
My Heart Transplant: Taking Control of a Renewed Life
For those who suffer from little-understood conditions, obtaining accurate diagnosis and treatment is only the beginning of our struggle. Typically limited information as to the cause of the condition exists and therefore the ability to control our circumstances diminished. Frustration over this lack of control can lead to a downward spiral. 13 months ago at the age of 34 I nearly lost my life to a rare cause of heart attack, Spontaneous Coronary Artery Dissection (SCAD), and I required an emergent heart transplant. The causes of SCAD remain unknown.
Yet this lack of control presents an opportunity as a coping mechanism enabling survivors to focus not on what we could have done differently but instead on moving forward. I believe when restored, we have an obligation to make a difference with our renewed lives. Certainly, one thing we can control is using our story to help others struggling with similar circumstances.
My talk will focus on the use of digital media to elevate awareness regarding lesser known conditions and the importance of seeking medical attention at the onset of symptoms.
How to use open health care data to empower patients
The industry has taken to calling medicine the new “MoneyBall” which makes the implicit analogy that health care is like baseball. We love the idea of evaluating the data of providers as teams, rather than as individuals, but Healthcare is nothing like baseball.
Instead, health care used to be a sport like Golf, played in a solitary man-vs-man fashion where teams did not matter too much. Now it is becoming a sport like Rugby or Frisbee Golf… and we have the data visualizations to prove it!
Empowering patients with transparency and convenience is the future of the patient financial experience
John Adractas, Dave Johnson, Corey Meyer, Ellen Zwickl
Patients are simply people in health care situations. A core challenge being that higher financial responsibility prohibits many (most) people from knowing the basics as well as they would outside health care, including what costs they will face, what value they get, and how to choose well. These disparities with everyday life sometimes scream out, loudly, to today’s health care consumer.
Led by returning Medicine X speaker John Adractas, this panel will explore how consumer empowered experience norms and health care transparency trends are shaping the future of the patient’s financial experience. Highlights will include discussions of ratings, scheduling, and estimates. Panelists include Corey Meyer (Director of Patient Access, Lancaster General), Ellen Zwickl (Program Manager, Counsyl), David Johnson (4Sight Health), and/or David Vivero (CEO/Founder, Amino) – leaders and experts on innovation in transparency and transforming how patients make decisions.
In closing, we will analyze health care’s transition from a transaction to an experience model for the patient’s financial journey, and the emerging strategies needed to succeed.
Integrative medicine in the US: a panel discussion regarding the current role of integrative medicine in treating chronic conditions
Sangeeta Agarawal, Geri Baumblatt, Gabriel Lopez, MD, David Spiegel, MD, Jeffrey White, MD
The current role of integrative medicine in treating chronic conditions will be discussed among a panel of 5 individuals with varied medical and patient backgrounds. The panel will consist of primary author Sangeeta Agarawal, a former oncology nurse and current digital health entrepreneur with an integrative medicine background, Geri Lynn Baumblatt, Executive Director of Patient Engagement at Emmi, Gabriel Lopez, Medical Director of Integrative Medicine at MD Anderson, David Spiegel, Director of Integrative Medicine at Stanford, and Jeffrey White, Director of OCCAM at the NCI.
The topics discussed will include a general breakdown of the landscape of integrative medicine in the US and a description of some typical integrative medicine treatment modalities. In addition, how patients find integrative medicine solutions, how these solutions are used, the role of alternative medicine practitioners and their perspectives, and the motivating factors behind western medicine providers who are embracing integrative medicine will be discussed. The panel will wrap up with the research being conducted in integrative medicine, the changes in reimbursement models, and the future role of integrative medicine. The main focus of the panel is to educate about the field of integrative medicine and how patients can make educated decisions about their care.
Ah-Ha! moments in mental health and chronic disease management.
Allison Ferlito, Kristin Coppens, Alan Brewington, Mark Freeman, Danielle Edges, Charlie Blotner
How do we put a personal face to the feelings that hypoglycemia, or chronic pain, or other physical health struggles invoke in terms of our emotions? What moments have changed the way we think about mental health and chronic disease, and how can we encourage these same poignant health care interactions in the lives of others?
This panel will explore just how vital this conversation is in chronic disease and mental health management by featuring multifaceted patient, caregiver, and mental health advocate perspectives. In order to facilitate this conversation for all patients, we must raise the topic from the very source: ePatients themselves. Therefore, this panel is ePatient-centric in its selection of presenters. We will identify crucial learning moments in understanding our own mental health, while promoting a transparent discussion that remains much-needed in humanizing health care.
The panel will include ePatients Alan Brewington, a MedX scholar and MedX ePatient advisor who advocates for the arthritis and chronic pain communities; Kristin Coppens, a MedX ePatient advisory panel member, communications professional, and chronic disease advocate; Danielle Edges, a MedX scholar and pediatric health care advocate actively involved in the heterotaxy syndrome, congenital heart defect, and Abernethy malformation patient communities, among others; Allison Ferlito, M.S., a MedX scholar, MedX ePatient advisory panel member, and diabetes advocate; and Mark Freeman, a MedX scholar, MedX ePatient advisor, and cofounder of online mental health community Everybody has a Brain.
Ah-Ha! moments relevant to the following topics will be discussed:
- Why the words we use matter so much
- Barriers to care
- Continuum of “before, during, and after” mental health becomes a focus of care management; early intervention in normalizing this conversation
- Caregiver resources and how to talk to children/teens about difficult health topics
- Managing multiple diagnoses
- Curtailing advocacy “burnout”
The panel would also be open to answering audience questions, time-permitting.
The language of disease and its effects on relationships
Sarah Kugler Powers, Dan Duffy, Robert Fredericks, MD, Pamela Ressler, MS, RN
Part 1: Ebola and non-patient to patient relationships
The images we see on television of people dealing with Ebola are quite alarming. Patients bleeding from every orifice, horrific raised rashes, people in hazmat suits taking away bodies on carts: all the visuals conveyed instill a deep fear in those viewing them and scream “Stay far, far away!” (Malamud “Salon” 2014)
In this situation the compassion we had for foreign nations suffering from the disease was relatively limited. While a few American doctors went to help treat the outbreak, the vast majority stayed behind. When an American was infected, the United States immediately airlifted him home to be treated and cured. But how many more did they leave behind to die?
When the few Caucasian people caught the disease, the president was quick to announce that the chances of it spreading here were “extremely low” and the white house fact sheet stated that the chances of a United States outbreak was “highly unlikely” (Malamud “Salon” 2014). Malamud states this basically gave off the “subtext…that this is not our problem” (Malamud “Salon” 2014). The disease was seen as largely foreign and was distinguished by its “otherness”. It’s foreign, it can’t happen here. This reinforces the xenophobic language of disease we have towards Ebola. It’s “other”, “foreign”, “can’t happen here”
This is one demonstration of a non-patient to patient relationship: FEAR. Why the deep seeded fear? It causes people to have to confront their own mortality; don’t want to die and can’t face the reality of death.
Part 2: Autism and patient to patient relationships
Parents of a little autistic boy wrote an article about raising a child with autism. They called their son “not of this world”. Others reading the article thought they were implying people autism were burdens and characterized their son as damaged. This also offended people with adult autism when they used words such as “impaired”, “delayed”, “non-verbal”, and though they hated it say it, “low functioning”. But the other half of the autistic community thought they were brave for being honest and speaking their minds.
It was an example of patient vs. patient communication; a community divided. Divided over the language used to describe this disease they had in common. So we quickly learn that like-minded communities can often be divided over the issues of language.
Part 3: cancer and patient-physician communication
When a patient is first told that he or she has cancer, it’s only the start of the shock. From cancer, comes the type: testicular, breast, brain. Then comes the prognosis: curable, manageable, terminal. And all of this has the potential to take control of a life in an instant. The obvious conversation to be had includes treatment options and answering the first battery of questions from the patient. What is not so evident but is increasingly necessary are the questions that many physicians don’t even think about but patients live with every day during treatment: how do they see their disease, as a self-abnormality or a foreign invader? What terminology seems natural to them, martial or pastoral (a fight or a journey)?
Cancer is an almost uniquely personal disease as, in a sense, it’s a part of you trying to hurt you. While physical treatments like chemotherapy and radiation may be similar for a group of people with cancer, the outlook can vary drastically from person to person. World War II historian and author Cornelius Ryan enveloped himself in military terminology, saying, “I have surrounded myself by barbed wire, land mines, and several squads of infantry, and we are ready to take on all comers.” (Ryan C, Ryan KM: A Private Battle.)
For others, this linguistic culture is not just counterintuitive, but destructive. One patient who had seen an actual battlefield once said, “The standard comparison of cancer as a war to be fought—a ‘battle with cancer’—was less than palatable. I had already experienced real war in Vietnam and was not anxious to repeat anything closely resembling that.” (Martin J: A monumental victory: Talk of the gown.)
On the surface, this is an untenable position for health care providers (and, in reality, friends and loved ones). Which is the correct approach? In this age of anti-paternalism, where the patient is more included in medical decisions than ever, it should be broached by the provider to at least have patients think about a decision that they will live with through each conversation of each day.
An even deeper conversation may also be broached as this part of the medical plan is plotted: how patients deal with other patients. Each story is unique, and is being written as it goes. It is imperative that patients are mindful that their choice is their choice, not to be infringed upon, but not to be projected either.
Physicians, of course, must be mindful of the militaristic language debate when approaching their cancer patients and try to discover what works best for their patient. There are several other metaphors a doctor can use when discussing cancer with their patients. One such metaphor is the journey metaphor and the road of life. The doctor can speak of “exiting the freeway” on which they’ve been traveling, whether it be on “cruise control” or “high speeds” with little thought of getting anywhere but the next destination. They’ve hit a bump in this road called life, where one may often encounter detours and u-turns. (Reisfield and Wilson, “Use of Metaphor in the Discourse on Cancer”).
The Human Side of Tech: Enhancing Digital Health Programs Using Technology to Complement Human Interaction
Margaret Laws, Eliza Gibson, Alex Drane, Wendy Sue Swanson
The successful integration of spiritual competencies within the university level medical education environment
Eric Nelson, Michael Cantwell, MD, Bruce Feldstein, MD, Marilyn McEntyre, PhD, Cassandra Vieten, PhD
Last year a med student from Stanford University presented an impassioned plea to an international group of health care professionals gathered for the 2015 Medicine X | Ed conference. Her desire was for medical schools to incorporate a broader spectrum of subjects into their required curriculum, including some of the non-medical courses she had taken that she felt helped her to relate to her patients in beneficial ways. Unfortunately, she had to schedule these courses over and above her already heavy course load. For her the disconnect between what she knew her patients wanted and needed and the limited and limiting focus of her required training was obvious.
As it turns out, it’s not just med students but practicing MDs, nurses and other health care workers alike who are beginning to recognize the unique role they have to play in addressing the complexities of their patients’ life circumstances, the pressures they live with, their fears, even their capacity to maintain a sense of purpose and meaning during times of crisis, including end-of-life situations. Although tending to such spiritual needs has long been considered the exclusive purview of chaplains and clergy, studies confirm that there is both the demand and the opportunity for this responsibility to be shared by the medical professionals involved with the day-to-day care of patients.
It seems appropriate, then, for one of the world’s premier patient-centered medical conferences to explore this topic more deeply by convening a panel of uniquely qualified, medically trained individuals to speak on the subject.
Where are the nurses?
Pamela Ressler, MS, RN, Terry Fulmer, PhD, RN, FAAN, Perry Gee, PhD, RN, Beth Toner, MJ, RN
In the United States there are currently 3.2 million nurses, yet where are the nurses in the Medicine X community? Nurses have been visibly absent at Medicine X…could they be a missing link in the Medicine X community? Nurses are trained in a philosophy of care that focuses on restoration of function, health and wellness within the context of illness. Physician training, on the other hand, emphasizes diagnosis and treatment of injury and disease. Understanding these philosophical differences, how might nurses help to bridge the gap in full collaboration between patients, practitioners and society? How might we work together to create a model of health care that focuses on Everyone Included™? Our panel of dynamic nurse leaders will unpack these questions from multiple perspectives and engage the audience in considering new ways of thinking about the role nurses can play in Everyone Included™ and the Medicine X Community
Beyond live video telemedicine – the power of stored video in asynchronous medical communications
The changing face of medical delivery over the past several years has tended to distance patient from provider. A system that was originally built on trust and personal relationships has become depersonalized through a focus on gathering data for the EHR, and insuring proper billing.
Even the recent trend of the quantified self has disaggregated the person into a series of de-contextualized data points.
Video technologies offer the promise of re-personalizing medicine in profound ways, and in the process, increasing patient satisfaction, creating new economic opportunities, and improving medical outcomes.
Imagine someone’s mom, scheduled for an important visit to her doctor to receive the results of a recent biopsy. Children may live in the same town or across the country. Everyone in the family has an interest in what happens in the visit. Now imagine that the doctor comes into the room, and says “don’t worry about taking notes, or even figuring out how to communicate this to your family. We’re recording this session, and will make it available for you to review, and for your children to see as well.
Instead of the patient feeling stress about the inevitable conversation with family, she can concentrate on the conversation with the doctor. After the visit, the kids get notified that the recorded visit is available for them to review. Instead of calling mom and asking how it went, the kids can each call and offer specific ways to help.
Dozens of similar opportunities exist to improve clarity, recall, and engagement among professionals, patients and their care networks:
- Recording discharge instructions and patient visits
- Care Coordination
- Between visit video check-ins
- Personalized patient education
- Recording complete or partial video telemedicine encounters
This presentation will showcase several real world situations in which recorded video demonstrably improved communication between key stakeholders, and resulted in improved satisfaction, compelling economics, and better medical outcomes.
Point of care ultrasound global: Resource limited and resourced environments
Resa Lewiss, MD
In 2012 the Accreditation Council for Graduate Medical Education (ACGME) and the American Board of Emergency Medicine (ABEM) released the Emergency Medicine (EM) Milestones. One of the 23 EM milestones specifically identifies emergency or point of care (POC) ultrasound as a sub competency for trainee education and clinical practice. POC ultrasound can be traced as a development from early clinician based ultrasound in Cardiology and Obstetrics-Gynecology to the present in Emergency Medicine, Critical Care Medicine and Hospitalist Medicine. Point-of-Care ultrasound had much of its early success in the United States in county emergency departments and resource limited settings, such as rural clinics.
Similarly, POC ultrasound has historically been one of few options for care requiring diagnostic imaging in the developing world and in otherwise resource limited environments such as the Thailand tsunami, the Haiti earthquake and other humanitarian emergency situations. In the most or least developed contexts, POC ultrasound is proven to advance the quality and provision of safe and efficient health care.
Leaders in the POC ultrasound community have been the innovative educators in their residency programs, developing fellowships for later stage trainees.
Increasingly, these same leaders are disrupting traditional undergraduate medical education curricula across this country’s medical schools. Students are learning anatomy and physiology using POC ultrasound in cadaver laboratories. They perform cardiac examinations with the stethoscope, simultaneous with performing a hand-held POC ultrasound examination. Even POC ultrasound courses for undergraduate and pre-health students have been developed. The panel will discuss the past present and future for POC ultrasound in resource limited as well as resourced environments. They will focus on trends in medical education such as flipped classroom and just-in time learning. These education methods have allowed POC ultrasound to change the way students of all levels are learning and integrating technology. The panel will focus on trends in global health in the use of POC ultrasound. Moreover, they will focus on future trends of the technology and its permanent role in patient care and health.
Maximising the effect of levodopa in people with Parkinson’s through domestic quality wearable devices and programing a ‘SatNav’ for Parkinson’s disease
I am trying to develop an app to work on a normal smartphone linked to smartwatch or band you can buy generally that manages pd sufferers existing medications and makes real time suggestions when the optimum time for the next levodopa is. A ‘Satnav’ for Levodopa that works for you to navigate you through the day, telling you when you’ve missed a dose and compensate accordingly and knowing that you’ve taken a pill and to stop worrying.
This work builds on existing studies and tries to utilise domestic over the counter products. It does not suggest changing dosages but will ask PWPs to contact the relevant medical professional to do so. As Sara Riggare writes that she self-cares 8765 hours for every hour of professional neurological care.
This research and development project would combine medicine management software and wearable devices such as wrist bands to analyse and find the best time and the amount of medications a person with Parkinson’s (PWP) is on – in real time with biofeedback giving physical confirmation through an app that meds have been taken using bio-signs picked up on the device and feeding back under/missed medication through vibration or sound.
Readings from sensors will be correlated against models of the meds the patient is taking created using a levodopa modelling web app. The author will track his own PD with these devices. It is hoped that a single device could be sourced, it is hoped to use domestic low cost sensors. We are looking for a correlated event i.e. Changed when events occurred. Sensors include heart rate, blood oxygen, temperature, accelerometer etc.
With minor adaptations this could be used further: when a baseline has been set for PWPs it would become possible to explore the responsiveness of that PWP to a specific medicine and their own metabolic speed. As it seems that pd varies from PWP to PWP this could be a very good tool to dynamically fine tune medication for a PWP using Artificial Intelligence heuristic learning techniques. This methodology would allow research to be conducted into all types of symptomatic therapies, medical, complementary, alternative, physical or psychological. This method could also be used to improve treatments for other ailments (e.g. chronic pain relief for Arthritis). Initially work will concentrate on Levadopa based meds (Stalevo, Sinemet Etc).
The initial work will be to develop a methodology of tracking and changing that is interactive with the user and professionals in order to develop an algorithm that would enable a smart device to deliver this service. It is hoped that collaboration with as many teams researching this area will provide an improved situation for PWPs and that this project can be based on many other research papers. It is intended that it should have crowd sourced research subject from the many Parkinson’s fora and info sites.
Please check back later, more abstracts will be added as they are accepted.
MHealth and big data are catalysts for personalized patient care
The intersection of widespread mobile adoption, cloud computing and health care will enable patient-reported outcomes to be used to personalize care, draw insights and shorten the cycle from research to clinical implementation. Today, patient-reported outcomes are largely collected as part of a regulatory shift to value-based or bundled care. When patients are able to record their experiences in real-time and combine them with passive data collection from sensors and mobile devices, this information can inform better care for each patient and contribute to the growing body of health data that can be used to draw insights for all patients. This session explores the current limitations of patient reported outcomes and how mobile health and big data analysis unlocks their potential as a valuable tool to deliver care.
At the end of this session, participants will understand the evolution from today’s static patient-reported outcomes to fully patient-driven outcomes that enable personalized care based on each patient’s situation and life goals. They will be learn strategies for how to apply to their own situation, whether they are patients, providers, or health care administrators.
My Genomic Life (a.k.a the G Files)
It has been argued that patient empowerment starts with patient education. Similarly, it has been argued that lay-people cannot understand aspects of their own medical data. In this context, we see an increasing volume of socio-medical research about choice, consent, safe storage, management and sharing of health data.
In the case of genomic sequencing, such debates are exacerbated, but, “[t]o oversimplify, the debate has been framed as a struggle between medical (or government) paternalism and individuals’ right to information about ourselves. […] We think the day will come when this framing is appropriate, but not until the diagnostic and prognostic capability of genomic information has been clinically validated”.
In the context of genomic information becoming available to lay-people, socio-medical research studies are making steady progress to improve comprehension and engagement, counselling and consent, information management and data sharing, filtering analysis, returning results and ongoing communication with clinicians and patients. However, ethical debates are increasing with the many aspects being revealed. The uses people have for their genomic information will continue to evolve as we learn more from genomic clinical practice and studies.
Susannah Fox reminds us that when researching a new area, we need to start from the beginning: do we have the right questions in order to hope for answers? Our workshop aims to explore precisely that territory, of people’s basic perceptions related to the highly complex genomic information. In doing this, we hope to shed some light to guide further research into this matter, and also, by extension, in lay-peoples’ engagement with the life of their complex personal health information. Stanford Medicine X offers both the ideal context and pretext for its participants to come together, everyone included, to explore this very interesting topic: “What do you want for your genomic life?”
We plan to engage everybody via a combination of activities, in order to elicit reflection, critique, or debate. We will form small groups to increase engagement and, of course, all-in debates will punctuate the workshop. We will design a range of activities and, depending on the time allocated, we will decide on the most appropriate mix. Materials (e.g. quizzes, games, “what if” scenarios, stationery) will be provided throughout the workshop, as appropriate.
Applying behavior change models to educate genetically at-risk celiac disease patients: a case study and workshop
Aimee Corso, Alice Bast, Daniel Leffler, MD, MS, Patrick McGovern, Kristin Voorhees, MA
This workshop will teach attendees how Beyond Celiac, a patient advocacy organization, is educating and empowering patients diagnosed with a serious, genetic disease to help advance diagnosis rates by encouraging those most at-risk to be tested: their biological relatives. Learn how qualitative patient-powered research that uncovered perceptions, barriers and knowledge gaps about disease risk and the testing process informed the design and launch of a national awareness campaign.
When a health condition runs in the family, properly educating at-risk relatives is a critical tactic to improve diagnoses. To be successful, it’s critical to first identify and understand the specific role those already diagnosed have in helping their biological relatives understand disease risk.
But this strategy represents only one piece of the puzzle. Those diagnosed cannot take action for their relatives and changing a person’s health-related behavior is notoriously difficult. These more basic challenges are just half of the hurdles the celiac disease field must overcome in order to advance diagnosis rates.
Enter “gluten-free.” Now a common household word, its myths and food industry growth have obstructed understanding of celiac disease as a serious genetic autoimmune condition whose only treatment today is the gluten-free diet. The disease remains misunderstood and, as a result, is largely self-diagnosed. For the 83% of Americans left undiagnosed or misdiagnosed, their health is at stake and they are at risk for lymphoma, bone disease and other autoimmune diseases.
This workshop will examine how Beyond Celiac identified a creative solution to this uniquely complex problem by conducting primary qualitative research using an online community of patients and untested relatives. Rooted in the basics of verbal and non-verbal communication, a family member’s likelihood of getting tested is determined by key factors including how and when we talk about disease risk and severity and the mindful balance of being both informative and caring.
Developed in collaboration with expert clinicians and a video production company, the Beyond Celiac campaign has reached over 642,000 people through online discussions, webinars, podcasts, views and downloads alone in 7 months. After using campaign resources, 95% of untested relatives surveyed said they are likely to ask their doctor for the celiac disease blood test.
Participants will benefit from interactive dialogue and valuable insights about:
- A creative approach in conducting primary patient-centered research
- How motivated patients can help influence diagnosis strategies
- When online health discussions become barriers to behavior change
- The application of theoretical behavior change models, including role modeling and the Health Belief Model, one of the most widely used conceptual frameworks in health behavior
- How clinicians can supplement these efforts and apply similar approaches to their care models
Implementation Presentations (38)
Mobile and digital technology platform for patient care transition and the nexus for patient care, communication and medical education in the clinical learning environment
The Accreditation Council Graduate Medical Education (ACGME) has instituted new accreditation guidelines with primary focus on quality patient care and patient safety during transitions of care. Numerous studies cite patient care handoffs as a key cause of medical errors and the need to focus on process improvement. Baylor College of Medicine (BCM) GME has focused on making patient care transition the foundation for improving patient care, as well as, medical education.
BCM , in a collaborative venture with ConsultLink Inc (founded by a BCM faculty member), has developed the CLE (Clinical Learning Environment) 360 initiative to leverage mobile and digital technology in improving transitions of care, communication and education. CLE 360 was designed by college faculty and residents using the ConsultLink Care Collaboration PlatformTM. It is first deploying and managing the patient care transitions at BCM’s multiple affiliate hospital sites. The next phase creates the nexus for patient care, communication and education functionality based on data analysis from the initial deployment.
All stakeholders benefit from the nucleus created:
- GME – oversight and execution of education in the clinical environment, data capture for overall activity and results analysis feeding curriculum adjustments. (i.e., the ability to view analytics of procedure logs in real-time by supervisors to direct and optimize the learner’s clinical training).
- Medical Education – facilitating competency-based learning via data capture of diseases managed by all levels of learners and each individual. The data entered as part of the handoff workflow can subsequently drive learner-directed and curricular needs.
- Physicians and trainees – providing task management functionality to improve rounding efficiency. Handoff details can be accessed and created from any device throughout the day such as when patient care plans are being formed at the bedside.
- Clinical site – ability to receive granular feedback on near misses or adverse events by incorporating hard stops for reporting as part of daily handoff workflow within the app.
- Faculty – participate in real-time remote supervision of residents such as during patient handoffs with the ability to provide immediate feedback at a preview stage
Give ’em what they want”: using patient centred innovation to rock the boat and change the system
Digital health services and wearable technologies are meant to empower users to change behaviours, and become better informed, more engaged patients. However, to what extent has the rhetoric of empowerment in the context of digital health been diluted to the point that when we speak of “empowering users”, what we really mean is “let’s get the patient to do our job for us”. Have we simply hijacked the rebellious language of human centred co-design to commodify citizen-led initiatives? Is fostering a digitally engaged patient truly about empowerment, or have service providers just become lazy?
This presentation draws on three formative projects: my work founding a free fitness service for marginalised women in Vancouver’s Downtown Eastside when I was 19 years old, my experience providing patient-centred frontline health care services for people involved in street sex work in a rapidly digitizing health and care landscape, and my current role as a commissioner of Europe’s largest health and care website, NHS Choices. These examples will be used to illustrate how building from a user-centred perspective can be transformational — assuming that your users have a genuine need for your intervention.
Merging social psychological perspectives with industry best practice, this presentation negotiates the tenuous space occupied by those working to effect change within “the system” on behalf of users, with more radical projects seeking to disrupt, challenge and transform “the system”. In doing so, I will explore how valuing diversity and inclusivity can lead to better digital health care for everyone.
Using data tracking to provide patient-centered care: Southcentral Foundation’s Wellness Care Plans
This presentation will cover steps that Southcentral Foundation has taken to better meet the needs of its patients (referred to as “customer-owners” at SCF) who most frequently access services. SCF is an Alaska Native-owned non-profit health care organization in Anchorage, Alaska that is responsible for providing health care and related services to approximately 65,000 Alaska Native and American Indian people in Alaska. SCF took on this responsibility in 1998 and has continuously worked to improve its services ever since.
Many health care organizations spend hundreds of thousands of dollars on software to identify patients who are at risk and “forecast” utilization of health care services. Health organizations use this information for financial purposes and to identify “heavy users” of their system. Patients who are identified as “heavy users” are often assigned a special case manager or navigator, not for their benefit, but to reduce their number of visits and bring cost savings to the organization. However, the software often fails to accurately identify “heavy users,” and it also fails to provide information that will help providers meet the needs of the patient.
In contrast, SCF has created a disease agnostic system for identifying customer-owners whose behavior indicates that they have an issue impacting their health. When customer-owners have several admissions to the hospital or several visits to the ER, SCF does not scrutinize them, restrict visits, or change their provider or case manager. Instead, SCF’s staff looks for ways to partner with the customer-owner to help them reach their goals, and works together with the customer-owner to create a Wellness Care Plan to address the root issues they are facing (as defined by the customer-owner). SCF’s tracking system then reports the number of negative visits (ER, urgent care, etc.) and the number of positive visits (behaviorist, dietician, etc.) before and after the Wellness Care Plan. The goal is not to reduce the number of visits, but to work with the customer-owner to identify what changes can be made so that they are supported in a manner that works for them. The system allows SCF to evaluate, in real time, if the services provided are having an impact for those who need them most. It also provides data that SCF uses to improve population health.
This session will be valuable for anyone interested in finding an effective method for meeting the needs of the people using their health care system most. SCF’s data tracking tool and Wellness Care Plans are a person-centered method for ensuring that customer-owners receive the care they need and that the visits a customer-owner makes are effective at dealing with the health issues they face. The session will cover the specifics of SCF’s data tracking tool and Wellness Care Plans, as well as the general approach SCF takes with customer-owners and the best ways SCF has found to help them achieve wellness.
Saving our children: how to reverse the autoimmune disease epidemic
Bonnie Feldman, MD
The recent renewal of the War on Cancer reminds us that 45 years ago, cancer was in a similar place as autoimmune disease is today. There are some 100 autoimmune diseases, scattered across multiple medical specialties, which obscures this hidden epidemic. In total, autoimmune disease affects 16% of the US population – more than cancer and cardiovascular disease combined – and is one of the fastest growing categories of chronic disease, especially for women and children.
As with cancer, autoimmune disease needs a unified front to marshal resources, focus research and develop better diagnostics and drugs. By not aggregating autoimmune diseases, we are missing an opportunity to target a major cause of suffering worldwide. This session aims to increase awareness of the incidence and prevalence of autoimmune disease, as well as the continued challenges of diagnosis and treatment.
Autoimmune diseases can take years to diagnose and, despite the advent of biologicals, are still very tough to treat. Many patients, unhappy with conventional medicine, are building Web-based communities that have unleashed a self-care movement: diet, exercise, meditation, and alternative modalities. These empowered patients seek community and advocacy as well as better care and communication, calling for multidisciplinary collaboration across conventional and complementary medicine.
With a growing mountain of patient data and new analytic tools enabling research in microbiomics, immunology, genetics, and human performance (including exercise physiology), we are becoming better equipped to find root causes, speed diagnoses, personalize treatment, and learn how to prevent autoimmune diseases. At the same time, advances in digital communications (remote monitoring, mobile, telepresence) can improve care coordination and connect patients with multiple specialists and complementary practitioners.
The time is now to build bridges using research, digital tools, conventional and complementary medicine to tackle the autoimmune epidemic. Nutrition, exercise, and movement therapy are the low-hanging fruit for such collaborations. We need to create a learning community that can find ways to minimize flares, improve quality of life, and ultimately prevent disease in patients and their children.
This talk will build upon the findings of our Stanford MedX 2015 autoimmune patient workshop, along with new research (to be published in a white paper) to brainstorm how we can work together using these new concepts and digital tools to reshape diagnosis, treatment, and prevention for autoimmune patients now and for generations to follow.
Telemedicine and network creation to build capacity for palliative care to reach anyone that needs it
ResolutionCare is a community based palliative care program with a meta-spatial vision of community using any available technology to bring compassionate and competent care to everyone everywhere as life approaches completion.
I will present on our progress to date as we work at high velocity and with soul to solve these three enormous and painful problems faced by people with serious and life threatening illness as well as the inspired professionals that simply want to care for them:
…..Exploding demand for person centered palliative care in the face of an aging and ailing population.
…..Shockingly inadequate access and capacity due to workforce shortages of palliative care professionals
…..Crisis levels of burn out and professional distress among those we count on to guide and care for us when we are sick.
A dynamic conversation about care for people with serious illness and those approaching death is exploding nearly everywhere in our society. From outside my field of palliative medicine, there is the work of Ellen Goodman and the Conversation Project, the intimate chronicles of Oliver Sacks last days in the New York Times, and the Institute of Medicine’s sentinel report on “Dying in America.” Atul Gawande with his bestseller, Being Mortal, offers his own awakening to the terrible truth of how our system of medicine fails to deliver the care needed and perpetuates the flimsy idea that we can fix anything.
From within the health care system, decades of effort from the likes of physician/author Ira Byock and trailblazing physician/ leader Diane Meier, as well as thousands of dedicated and inspired professionals, are bearing fruit to bring Palliative Care to central relevancy in discussions of health care delivery and reform. Baby Boomers like myself are being confronted with the truth of aging, the limits of technology, and the waste of a system that is doing exactly what it is designed to do. In his recent TED talk, BJ Miller put it simply, “Health care was designed with diseases at its center, not people. Which is to say that it is badly designed.”
ResolutionCare is architecting a remote network of inspired, qualified, and incredibly well trained team members using telemedicine to provide integrated care in the home. With design centered on the experience of both the person with illness and family, we are building an integrated IT platform that will contain the medical record, videoconferencing, care coordination among the team and with primary care, cancer care, and other ancillary services. All of the back end work to obtain records and schedule appointments, coordinate family meetings, enable the technology, integrate access for the care team in the ground will be invisible to both patients/families and our treasured team members. For them, they will simply click on a link and be in the presence of person that needs them or a caring professional.
The proper role of the FDA For the 21st century
Dr. Joseph V. Gulfo
The current medical marketplace is vastly different from the marketplace that existed in the 1970s and ’80s when the Food, Drug and Cosmetic Act codified the Food and Drug Administration’s mission. Despite rapidly advancing technology and patients’ increasing desire to try new drugs and devices, the FDA has strayed significantly from the statutorily defined safety and effectiveness standards for drug approvals. The FDA now very often demands proof of clinical utility, including survival and disease outcomes, as a requirement for premarket approval. But hard proof of clinical utility is elusive, even for drugs that are clearly shown to be safe and effective as labeled. Rather than blocking safe and effective drugs on such grounds, we should allow physicians and patients to make outcome-oriented decisions, and rely on the medical marketplace to drive physician adoption of safe and effective drugs that prove to have great clinical utility in real-world settings.
A new study for the Mercatus Center at George Mason University evaluates current FDA policy toward new medical products and concludes that the FDA must return to its role as gatekeeper of safe and effective drugs and devices. The FDA has made significant incursions into private health decisions by exercising its public health mandate in a manner that was not intended by Congress. Rather than allowing doctors and their patients to determine how best to use a drug and ensuring that drugs placed in the market are safe and effective, the FDA has increasingly become concerned with controlling the outcomes of future judgments by physicians and patients regarding benefits and risks. The new medical marketplace should refocus the FDA on safety and effectiveness, leaving patients and doctors to evaluate and determine benefits and risks based on their experiences with the drugs.
To read the study and learn more about its authors, Joseph V. Gulfo, MD, economist Jason Briggeman, and graduate student Ethan C. Roberts, see “The Proper Role of the FDA for the 21st Century.”
The globetrotter’s guide to healthy travel: there and back again without getting sick
THB maintains a robust website with separate portals tailored to the specific needs of providers and patients. The site walks users through destination-specific recommendations on everything from food safety to packing lists. Online travel notices explain precautions needed in certain destinations because of situations such as disease outbreaks and natural disasters. THB also distributes information via two mobile apps, Twitter, Facebook and partnerships with businesses, student organizations and other federal agencies.
Through our experiences with disease outbreaks, emergency responses, and mass gatherings, we have continuously refined our communication and education strategies. We are now using online advertising and social marketing as another way to get travel health onto the public’s radar. We are also crafting an online travel medicine curriculum of continuing education courses available for free to all health care providers. Our ultimate goal is to make travel health a routine part of the dialogue between providers and patients.
Using design thinking to improve the safety and quality of health care for providers, patients and their families.
Since the 1999 Institute of Medicine’s groundbreaking report, “To err is human,” health care organizations have been exerting significant efforts to address the quality, safety, service and cost of health care delivery systems. While frameworks such as lean, six-sigma, PDSA, and others have been employed with success in a variety of contexts, there is wide consensus that current efforts are not delivering sufficient returns; there are still over 200,000 people dying each year from preventable medical errors, and over 20 times that number suffering medical injuries.
Design Thinking is a creative approach to problem solving and innovation that places real users at the forefront of efforts to solve complex, systemic problems. As the longstanding risk services organization for Stanford Medicine, at The Risk Authority Stanford, we’ve been on a journey over the past two years exploring how we might use the tools of design thinking to advance patient safety and improve the quality of health care delivery systems at Stanford Medicine. While design has been applied to addressing many aspects of the patient experience, we believe that has much to add to the conversation around patient safety, and has potential to open up a world of inspiration and impact. In this session, we’ll describe how we’ve applied and adapted the tools of design thinking to tackling this incredibly important aspect of health care, discuss the power of radical collaboration that brings patients, their families, and clinicians together, share the outcomes of our latest pr ojects, and share our lessons learned along the way.
Reimagining the future of health care: innovation at the University of Pittsburgh School of Pharmacy
Pharmacy has been and will be the frontline of health care. The average American lives within five miles or less of a pharmacy and makes, on average, 35 visits to a pharmacy each year. The current changes in health care significantly affect patients and providers. Automation, consumerism, digital health, and shifting reimbursement models are causing continual, dynamic shifts in pharmacy and health care. To ensure that the frontline of health care proactively leads the change, the University of Pittsburgh School of Pharmacy has developed the PittPharmacy Innovation Program.
Since 2012, this Program has incorporated innovation, creativity, and entrepreneurship into the curriculum. Development of the Program stemmed from other successful models of education in engineering, design, and business. The School of Pharmacy has changed its didactic and experiential education to reflect the shifting health care landscape. Didactic learning throughout the curriculum include design-thinking, return-on-investment, and creative problem solving. Clinical curriculum changes include moving away from lecture-based, static curriculum. For example, the School’s Drug Development course, teaching how new drug compounds traverse FDA regulation to become approved medications, was redeveloped as an alternate-reality game. In this semester-long game, student groups are treated as biotechnology companies responsible for the scientifically accurate, fiscally sustainable, and timely development of clinical trials. High-fidelity human simulations, “jigsaw” teaching, and narrative framing supplement the experience. Course instructors also serve as game master and facilitate the course via an online platform jointly developed by students and faculty from the School of Information Science in its “Serious Games” course.
Partnerships, internal and external to the University, have offered unique experiential learning opportunity for students and faculty in the PittPharmacy Innovation Program. Clinical partners offer students the opportunity to reimagine operational challenges through augmented reality technology, such as Google Glass. Technology companies allow students and faculty to reimagine education by considering the role of wearables in clinical practice and as a part of education. University partners leverage students and faculty to reimagine the possibilities of collaboration between disciplines, such as the creation of hardware-based solutions to facilitate refilling medications.
The PittPharmacy Innovation Program is empowering students and faculty to reimagine the future of health care with its partners by leveraging innovation, creativity, and entrepreneurship among students and faculty.
Utilising the improvement from health care social movement
Social Movements are collective actions by large, but sometimes informal, groups of individuals or organizations to carry out, resist, or undo a social change. Within health care there are many shared values, both for patients and professionals, so achieving common goals through a movement has an obvious appeal. For example, the Institute for Health Care Improvement’s (IHI) “5 million lives” campaign aimed to reduce medical harm in American hospitals. The movement generated considerable publicity and the IHI claimed they surpassed their target.
The rise of social media as a credible and accepted medium by which to disseminate information, decrease the knowledge translation gap and allow professional and patient engagement in a meaningful way has hugely increased the momentum and motivation behind social movements. Furthermore when we think about resources for change we tend to think about economic resources (budgets, technology, project managers etc). These resources are limited and finite whereas social movements can release resources in the form of social capital which is vital in environments where monetary intervention is not possible.
What does the future hold for social movements in this digital and hyper-connected age and can patient care directly benefit from communities creating an implicit will to change behavior? Key components of a successful strategy will be explored by utilizing the presenter’s experience of being part of two successful social movements.
NHS Change day, a movement largely inside a hierarchical system, balanced igniting frontline action with obtaining leverage of those in authority to make positive change happen without destroying its grass roots power. Aiming to get 65000 people to pledge to make a difference to their patients or working environments the first NHS Change Day amassed 189000 pledges in its first year and over 500000 in its second. The Change Day leadership team won the Harvard Business Review/McKinsey M-Prize for Management Innovation in the Leaders Everywhere Challenge, which showcases ‘real-world case studies and courageous experiments in rethinking the work of leadership, redistributing power, and unleashing 21st century leadership skills’. NHS Change day is cited as the largest simultaneous improvement exercise in the history of the English National Health Service.
Free Open Access Medical Education (FOAM) is an international movement that has brought together clinicians from many backgrounds and specialties. It has developed into a true digital community of practice as demonstrated in the 2015 MedX/Symplur Signals Challenge award which examined the hashtag #FOAMed. FOAM, along with patient derived digital communities such as #chroniclife, are social movements almost entirely derived within social media yet have all the attributes of a community of practice impacting on professional and patient outcomes.
For both Change Day and FOAM there are some common themes, not least the underpinning narrative being about commitment, not compliance. People rarely feel being ‘told to’ is motivational.
The following will be explored:
- The value of a ‘clear starting point’ enabling the creation of an historical reference point. This can be a particular health care incident such as a serious untoward event or even just a recorded conversation. The initial tweet that sparked NHS Change Day is known and the FOAM movement was defined in a public house in Ireland during an international Emergency Medicine conference.
- The need for an early powerful narrative that is easily re-told.
- The ability to transcend existing barriers (hierarchical, cultural or professionals) between members of a particular community or organisation to create new dynamic networks.
- The utilisation of social media in allowing collaboration, in particular the value of cross-platform dissemination of information
The presenter will describe methodologies by which successful social movements can be created, particular via social media, and how future success is likely to be dependant on the integration of patient and professional campaigns rather than them being in parallel.
Use of a patient-facing interactive software platform to improve the quality of medical decisions in clinic
Improving patient engagement in evidence-based decision making is a key tactic that has improved value in a variety of clinical settings. We evaluated patient ‘decisional quality’ in several common and expensive decision settings at our health system (treatment for benign prostatic hyperplasia, prostate cancer, low back pain, women’s choice of birth control, and newborn delivery method). We found that while satisfaction was high, both decisional conflict and condition-specific knowledge after physician counseling were below expectations. Pre-implementation surveys found patients have significant knowledge gaps after physician counseling (e.g., most pregnant women erroneously believe that a Cesarean section is required for babies >9.5 lbs.; few women are familiar with birth control options such as the contraceptive sponge and tubal ligation; many patients with herniated discs are unaware that pain will improve without surgery and are overly optimistic about the expected level of pain 1 year after surgery). Many patients also had significant decisional conflict after treatment selection with their physician, which is associated with delays in care and greater chance of blaming physicians for bad outcomes. We also found evidence of inappropriate use, especially in regards to the use of caesarean section for routine childbirth. The decisions we evaluated were “preference sensitive,” meaning patient values play a key role in identifying the optimal treatment choice.
We implemented an interactive software application (“WiserCare”) prior to the physician consult. The software ingests patient clinical data relevant to a decision, interviews patients to determine the relative strength of their values for the decision, and performs an instantaneous decision analysis. The platform is used prior to the physician visit, and generates an educational report for patient use in preparation for the clinic visit and a summary version for physician review. The software generates a personalized report of the patient’s preferences as well as which evidence-based treatments may best match the patient’s clinical and personal situation. The summary report is emailed to the physician prior to an outpatient clinic visit, in order to center the discussion on patient values and improve the efficiency of the visit.
We analyzed clinic workflows to determine how best to integrate the program without disrupting care. We educated physicians about the current state and why they could benefit from participation in the program. We first implemented the prostate cancer module, and saw significant improvements in decisional quality. Patients to date (N=125) that underwent the software intervention demonstrated higher satisfaction with care (98.4%), higher satisfaction with decision making (99.2%), and increased disease-specific knowledge (81.6%), compared to baseline measurement of these variables after the physician visit.. 30% of patients chose to provide qualitative written feedback about the application. 86% of these comments were uniformly positive, with most feedback indicating the tool was “helpful” “informative” and that the “overall process was good”
We are now scaling up the program by implementing the other conditions. Early qualitative analysis also shows that these patients continue to indicate that the tool is “helpful”. We are learning that implementation needs to be responsive to clinic contexts. We are collecting data on impact on decisional conflict, disease specific knowledge, satisfaction, and utilization patterns.
Drawing play: communicating with children about their environment through drawing at well visits
Drawing Play is a project that explores how children can become active participants in their well child visits. It is a unique collaboration between the Departments of Pediatrics and Communication at Rutgers University and takes place at the Eric B Chandler Clinic, a federally qualified health center that primarily cares for an underserved Hispanic community.
Pediatricians are tasked with guiding the long term health and safety of children and have a unique opportunity to talk to them about their environment. However, doing so is challenging for a number of reasons, from the time required, to a child’s cooperation, and ultimately to the method and level of communication employed. Research suggests that children’s ability to retrieve information about their experiences may be more readily accessed by stimulating their perceptive senses than by semantic stimulus. Starting with drawings could open a child-centric dialogue about matters that are important to them.
There is a long history of various drawing methods used by pediatricians and child psychologists among others, each of which has specific aims and means of interpretation. The use of drawing to communicate with children in a health setting has been studied since the 1920s starting initially with childhood development and aptitude with the Draw-A-Person test to Draw-a-Family test in the 1950s. In the 1970s they progressed into understanding family dynamics from the child’s perspective with Kinetic family drawing. These methods have also been used and extensively studied for understanding child abuse. More recently childhood drawing has been extended to understand childhood perceptions of the environment around them.
Drawing Play is a pilot implementation-research program that has engaged a number of children in drawing at their well child visits. Our team has been working to evaluate the effects of this intervention in comparison to the baseline visits without these drawings. While children between the ages of 6-12 are waiting at their annual well child visit they are given crayons and a clipboard and are asked to draw where they like to play. When they are seen by the health care provider the drawing becomes the starting point for discussion. The idea is to welcome the child to participate and share their thoughts in an environment that may be both daunting and frightening to them. Furthermore by starting with the drawing it is reminder for both the health care provider and the parent that the child’s voice and ideas are important to engage throughout the visit. More pragmatically, the information gleaned from the drawing can also provide a more richer depiction of the types of physical activity a child enjoys, which is important for providing healthy guidance.
We hope to share our simple but important strategy for inviting children to participate in their health care and provide some evidence supporting this intervention from our pilot study.
End of life, not end of story: learning from patients to transform a health system’s approach to advance care planning
Care for patients at the end of life requires that patient and clinician have a common understanding of disease status and goals of care in order to ensure that dignity and autonomy are maintained. Having difficult conversations with patients is a critical skill that can be taught but is often left out of medical school curriculum. All too often, doctors neglect end of life decisions with patients and critical patient preferences are not documented in the medical record.
Physicians cite myriad reasons why these conversations do not take place, including discomfort with the topic, fear of taking away hope, time pressures, and a core lack of understanding of the process. During this talk, I will share my personal journey to understanding the role and importance of advance care planning, which began in an exam room sitting with a patient and listening, rather than completing the intended task of a post-discharge checklist. As I learned to listen more than speak, bring up difficult topics, and tease out what was really important, I realized that this was information that needed to be shared and standardized across the organization.
After endorsement from leadership, a team was formed to lead the design of new curricula and new modules for the EHR which has resulted in success for the organization as well as better care for our patients. The resulting program, implemented at Atrius Health, included a multi-disciplinary, multi-year strategy to engage the full health team in both personal (sharing experience) and structural (modifying the EHR to encourage and support end of life discussions) ways.
At the end of the three year pilot, we improved documented advance care planning by more than 270%, with over 80% of primary care teams trained in documentation, goal planning, and difficult conversations. This success has transformed this effort from a pilot to the current standard of care. We continue to seek new avenues to further this important conversation. Our goal, which is very much attainable, is that all of our patients have the opportunity to share preferences regarding treatment at the end of life and that these choices are honored. Death is inevitable; death with dignity and according to one’s personal wishes should be as well.
The invisible threat to physician and patient safety: should you put your life in a second victim’s hands?
Is your doctor’s state of mind bad for your health? Patient safety hinges on implementation of human factors designs that minimize “unfitness” for clinical duty. Although much attention has been paid to fatigue, age, substance abuse, and clinical competence, almost no attention has been given to the second victim – the clinician who is psychologically impaired after an adverse event, such as a patient death. People (patients, family members, and clinical colleagues) inherently understand that death, trauma, or terror-inducing experiences are profoundly emotionally impactful. Should you put your life in a second victim’s hands?
The second victim’s clinical judgment, clarity of thought, and confidence may be compromised. This seems obvious and understandable, and is also supported by data. Patients who may be at increased risk for medical error due to the effect of distress on judgment and thinking are called “third victims.” Few patients would choose to receive care from a physician who is in this mental state.
Of course, this psychological unfitness represents a risk to patients, but also to the clinical community. Alarming high rates of physician PTSD, impaired performance, and even suicide (5x that of the overall population) have been reported. In one study illustrated in the image below, although half of clinicians felt their ability to provide safe care was compromised for a day, and 15% felt this lasted longer than one week, only 7% were offered any time off from patient care.
This session addresses the dire need to explore the impact of adverse outcomes on health care professions and how to implement the much-needed mechanisms that support clinicians, ensure patient safety, and consider ethical questions from both the clinician and patient perspective:
- Who has the authority to declare a physician unfit for duty (for any reason) if that physician disagrees and wishes to keep working?
- What is the “gold standard” objective measure for determining fitness?
- Do patients have the right to know if the team’s prior patient died on the operating room table?
- Are there unintended consequences of clinician support processes, either psychological (feelings of isolation or the groups’ loss of confidence in them) or professional (e.g. loss of employment or reputation)?
- How can we maintain uninterrupted patient care if clinicians must be relieved from duty?
Decreased hospitalizations and emergency visits for asthma: the use of analytics for population health
In the US, nine patients die every day from asthma. Asthma costs $56 billion annually in the US and is a leading cause of school days lost among children. Overall, two million emergency visits and nearly half a million hospitalizations from asthma occur per year in the US.
Globally, there are 300 million asthmatics in 2004, with another 100 million anticipated new cases by 2025. There are 250,000 premature deaths from asthma annually in the world, and nearly all are avoidable.
An analytics program generates a list of patients at risk for emergency department visits and hospitalization for asthma based on patterns of medication use and pertinent risk factors. Areas of focus include the ratio of controller to rescue medication use, a quality measure validated nationally by the NCQA, the date of the last emergency visit or hospitalization for asthma, smoking status, and the date the last asthma medication was ordered versus filled. This enables risk stratification by identifying patients who have poorly controlled asthma, engage in behavior that puts them at risk for future exacerbations, or are not adherent with prescribed medications. The primary physicians are updated with the names of patients at risk and can prioritize by contacting patients who need immediate attention. The list of at risk patients is automatically and regularly updated. A treatment plan is generated for consideration and individualized one-on-one discussions are available.
Changing patient and physician behavior was facilitated by information technology and physician education. A computerized algorithm, showing optimal doses for asthma medications by age group, helps physician decision making. We generate automated reminders to patients to follow up with their primary physicians or specialists. An asthma specialist provides guidance to physicians with a focus on meeting patient needs, champions best practices and evaluates referrals for difficult to treat asthma. For example, montelukast, a generic medication shown to be effective for treating asthma, is discussed as an option for cost-conscious patients.
Asthma hospitalizations decreased more than 50% after using the analytics program plus physician education as part of quality improvement. This finding was seen for three consecutive years, compared to the average number of asthma hospitalization for the previous six years. Emergency department visits decreased by more than 20%, and more than nine hundred fewer office visits office per year for asthma was noted. Further analytics to optimize asthma treatment is in progress.
Directly observing care: deploying unannounced standardized patients to improve quality
Although technology and “big data” are increasingly evoked as tools for evaluating and improving care, much of what matters in quality assessment can only be directly observed. Some nurses measure blood pressure accurately while others don’t. Some physicians provide effective preventive care counseling, or correctly examine the feet of their diabetic patients, while other only report doing so. All too often, clinicians miss critical clues during the medical encounter of patient life challenges, or context — such as an inability to afford a medication or take it correctly — and devise care plans that appear appropriate in the medical record, but are nearly certain to fail. A growing body of evidence suggests that current strategies for evaluating performance cannot differentiate between effective and ineffective approaches to care. Over a decade we have covertly observed over one thousand encounters, comparing what actually occurs during a visit to what is recorded. We have employed both unannounced standardized patients (USPs), and real patients who audio record their visits. We have documented wide discrepancies, and also demonstrated that observed lapses in care that are undocumented account for both excess costs due to overuse and misuse of medical services, and diminished patient outcomes. Finally, we have demonstrated that USPs can provide a cost effective way of identifying practice and performance deficits, and remediating those deficits using an audit and feedback approach. We have developed and employed software for synthesis and analysis of data collected by USPs, and demonstrated that errors detected based on direct observation predict both health care outcomes and costs. We propose that directly observing care using such a “mystery patient” approach could address currently unmeasured lapses in quality and performance and is in fact scalable.
Closing the gap: How technology empowers your frontline to improve health outcomes
Elderly care coordination is one of the biggest challenges facing modern medicine. It can lead to poor patient outcomes and costly, preventable hospitalizations. At the same time we are struggling to make sense of the increasing yet fragmented volumes of patient data. These factors hinder our ability to identify and coordinate care for our most high risk patients. What’s needed is a new model that leverages technology to empower everyone on the care continuum to act in the patient’s interest.
Whilst payers may be the most incentivised to coordinate care, they have traditionally had limited abilities to act. Most of the current strategies center on focusing efforts on the costliest 5% of members. Yet with elderly members, by the time they are on the payer’s radar, their health may already extremely poor and any intervention is therefore of limited impact.
At Clover, we believe in taking responsibility in bridging gaps in care. As the payer, we can utilize data from primary care physicians, labs, pharmacies, home visits and more to create a holistic profile of each member. From this vantage point, we are changing the relationship we have with our members from one that is transactional to one where we active working to improve their health. We also align with physicians by compensating them to provide high touch coordination and by supporting their efforts with our data.
Better predictive modeling allows us to accurately identify members with potentially undiagnosed illnesses, poorly managed chronic conditions and social issues before they escalate to an ER visit. Our technology then empowers our front-line staff of social workers, nurse practitioners as well as our members’ own primary care physicians to intervene and prevent a serious medical episode. This can range from home testing for congestive heart failure to helping members get financial assistance for drugs, improving their adherence.
At its core, our team has created an operational and technology stack to respond quickly in the interest of our members’ health. New information is ingested from many sources in real-time, allowing us to constantly improve our models. On the ground, we’ve designed a culture where anyone touching the member can make an impact on closing care gaps. Be it a nurse practitioner or a call center agent, they all play a role in identifying at risk members and helping them get the care they need.
During this session you will learn about the reasons why care coordination is a major challenge to the traditional health care system. You will also hear examples of how focusing on “deep data” rather than “big data” can create better risk models. Finally, you will leave with a picture of how technology, physician-payer alignment and operational culture can be combined to close gaps in care and improve health outcomes.
New Insights Revealed by First Treatments Crowdsourcing
We are introducing the first platform for crowdsourcing patient treatment outcome that addresses the disconnect between treatments’ success and patient reported outcomes. Multiple studies estimate that 25%-50% of all health care treatments are unnecessary, frequently harmful, and costly ($750 Billion per year in the US). The lack of meaningful health outcome data, despite the 51 million surgeries conducted in the U.S. every year, is a main cause for unnecessary health care. By capturing the voice of the patient, we can provide insights for how patient outcome data can be sourced by both medical professionals and patients to prevent unnecessary health care and curtail staggering health care costs.
Health Outcome, a consumer website, enables patients to rate their own treatment experiences and helps users find evidence based treatment outcome ratings. Health Outcome uniquely compares patient reported outcomes for both invasive and noninvasive treatments; this levels the playing field for all treatments and allows for the evaluation of not only expensive, invasive treatments but also noninvasive and less expensive treatments. Health Outcome is currently the largest and only database for America’s most common and costly back and foot injuries, a $100 Billion+ per year industry.
Patient reviews include both treatment ratings and patient information such as gender, age, weight, height, physical activity, and chronicity. Patient response has exceeded all expectations both in number as well as in quality of the outcome reviews, helping achieve a critical mass of information that already lends to insightful recommendations. In just a few months, patients have written over 50,000 treatment ratings and reviews with no incentive other than to help the community.
For example, Health Outcome patient data reveals that 84% of back surgery patients are still “in-pain” years after the procedure. Patients average rating for all types of backpain surgeries are on average, 2 out of 5, one of the lowest ratings among low backpain treatments. The data also shows that 54% of patients who received surgery once had two or more surgeries and that more surgeries are correlated with a higher likelihood of being in pain. The results are based on over 23,000 lowback pain crowdsourced ratings and reviews with over 1,200 surgeries ratings on the Health Outcome website.
In a very short time, patients have empowered Health Outcome with a critical mass of high quality orthopedic outcome information. We have tapped into a strong patient need to express themselves as well as learn from the aggregated experience of fellow patients. But this is only the beginning. The goal is to have a shared database of outcome data for most medical and health treatments so we can all have a better understanding of the true long term results of any treatment. We are excited to share our insights on finding effective ways to capture the voice of the patient. We plan on making our data publicly available and are looking forward to feedback from patients and the medical community.
The Impact of Precision Medicine Initiative on the Personalized Genomics
Pei-Ting Sarah Chou
In January 2015, Barack Hussein Obama II announced the precision medicine initiative to the public. Such precision medicine initiative could let the clinicians better realize the complex mechanism underlying the health state of a human being.
This initiation covers several goals: the privacy protection, the encouragement of the public-private partnership, the improved quality and availability of cancer treatment, the new method development of next generation sequencing technology, the reformation needed to support new research and care model development, the regulatory landscape review, the encouragement of innovative genetic sequencing technology and so on. The perspective of each focus in the initiative is first illustrated in detail. Second, the genographic project initiated by National Geographic Society and IBM will serve as the case study in this analysis. How the usage and the application of the output of the genographic project, which collected DNA samples from global population for human migration pattern mapping, are affected by such personalized medicine initiation is further analyzed. Last, the generalization of such analysis to other personalized genomics and applications is evaluated.
In brief, the analysis of the impact of the initiative on the personal genomics medicine shows the transparent trend of personal information retrieval and the regulatory tendency developed of such exposure control. The awareness of individual rights and the accommodation of public interests in advanced medical technology development need to be balanced in order to face the imminent challenges brought by the fast evolutionary science.
Patient partners: student-driven care transitions program
As the health care system rapidly changes to emphasize patient-centered care, quality, and efficiency, transforming medical education to support training in patient self-management and empowerment, health care delivery, and innovation is increasingly crucial. Stanford’s Patient Partners (P2) program is a student-driven care transitions program with a two-fold mission: 1) to improve patient outcomes and reduce readmission rates at Stanford Hospital and 2) to provide a hands-on, early clinical education for pre-clerkship medical students to serve as health coaches and lead quality improvement initiatives. This talk will explore successes and challenges of the program and share lesson learned that can inform digital health interventions to improve care transitions programs.
In partnership with Stanford Hospital and the medical school faculty, students work on multidisciplinary teams to support patients hospitalized for pneumonia, hip replacement, or heart failure to transition home from the hospital. The care transitions components are founded on the Coleman model, which empowers patients by providing them with resources for managing their care at home. P2 students first meet with patients in the hospital to understand their values, goals, and barriers to care. They then conduct a home visit and several follow-up phone calls in the month following the patient’s discharge. P2 is designed to reduce readmissions by training medical students, an untapped resource in the health care system, to help empower patients with tools to manage their health.
Patient Partners is a hands-on clinical, leadership, QI initiative that was designed to address gaps in medical education and patient care. Medical students often clamor for increased early clinical exposure and opportunities to add value to patient care and clinical innovation. Through P2, students gain essential skills that are fundamental yet difficult to acquire in the classroom setting, such as health coaching, motivational interviewing, and care management. As students work with patients and visit them in their homes, they learn the many challenges that patients face in understanding physician instructions, managing medications, and adhering to a care plan.
P2 has trained three cohorts of care transitions coaches thus far. The program averages 6 referrals per week, with over 80% of patients enrolling. P2 has evolved to address a variety of challenges. This talk will first address successes and challenges which will then lead into a focus on sharing opportunities for integrating digital health solutions into the discharge follow up process. We have learned that better follow up communication and data management is critical to supporting patients’ care transition and is currently absent from most discharge processes. Capabilities that we anticipate will improve P2 and similar programs range from follow up automated texting and Q&A with care providers, more accessible and easy to use discharge instructions, digital tracking of goal setting and adherence, and closing the feedback loop with EHR integration to improve communication with the care team. Such innovations will be instrumental to both improving patient care by facilitating quicker responses from the health care team, preventing costly readmissions and negative patient outcomes, and contributing to medical student education by training the next generation of patient-centered physicians and health care innovation leaders.
Implementation of eHealth and TeleHealth Apps in CEE
The presentation summarizes our bottom-up approach and initiatives, which improved providing of health care in the Czech Republic. In the region of Central and Eastern Europe (CEE), the Czech Republic is the only country that has not yet digitized health care. In 2016, only 80% of Czech general practitioners equipped with a computer connected to the Internet. The rest of the doctors write medical reports on a typewriter and physical copies of records are stored in metal cabinets. Doctors who have ICT equipment use many different kinds of software from various providers, both in primary care and secondary care as well as in public and private hospitals. Electronic transfer of patient data remains rare, and any Electronic Health Record simply does not exist.
We decided to be rebels and change the system from the bottom. Together with doctors, engineers and managers, we tried to change this by founding the Czech National eHealth Center in 2012. The goal was through a bottom-up approach gradually initiate changes at the national level. The main content of the contribution will be presenting the necessary steps and activities in the Czech Republic (CEE), which resulted in over 4 years to implement eHealth and TeleHealth applications to routine clinical practice. This included examples of good practice that were implemented into clinical practice. We also established procedures for including doctors who were open to ICT in health care and new organizational models of health care. We also worked to educate patients who are still not familiar with smartphones and tablets. In addition, we also introduced Telemedicine and eHealth at the Faculty of Medicine and Dentistry of Palacky University Olomouc curricula. As the only site in the CEE region, we have been awarded as a reference site by the European Commission for our innovative activities on Active and Healthy Aging.
Gradually, we implementation of Telehealth and eHealth apps in the official nationwide guidelines for cardiac care. At the end of 2015, we also contributed to the creation of the National Strategy for eHealth of the Ministry of Health of the Czech Republic. Our presentation will describe all essential steps of implementation to change and re-design of health care education, delivery and practice in the Czech Republic.
The Magic of Images: Make a Workflow that Works!
Alicia Martin-Hirsel, MD, RDMS
Global Women’s Health Support is a nonprofit organization that serves as a teaching platform to provide OBGYN ultrasound technical knowledge for providers in OBGYN clinics in of underprivileged areas of the world. We have gone to Venezuela, 1998, Tanzania in 2008, Indonesia and the Philippines in 2014. Our plan has been enlarged with the publication of “El Manual de Ginecología” a digital iBook in Spanish that includes a didactic gynecological teaching using a syndromic approach, which includes multiple images and videos. Our next commitment will be held in partnership with Curamericas International in the mountains of Guatemala. We will teach ultrasound to the midwives of 4 different “Casas Maternas” that are birthing establishments located in rural areas of the Guatemalan highlands. We are also presenting here our talk for the Medicine X 2016 meeting: The Magic of Images: Make a Workflow that Works!
Connecting Health Care Systems
Ismael Moreno, Alejandro Escario Mendez
We are used to plug&play devices on our personal computers and, immediately, start working with those. But when it comes to health care, most devices are detached from a main centralized repository. Thus, many relevant information is lost or never analyzed by experts while diagnosing. Why are we willing to lose information relevant to our health?
Having an out of the box solution to connect professional and personal devices with the patient’s clinical history, helps medical staff to access all relevant information when necessary. All this information, once it is sorted and displayed properly, not only increases the possibilities to detect the patient’s disease, but also its cause. Therefore, it improves the performance of the health care system and drops each person’s health care needed budget.
Going a step further, shouldn’t the patient’s doctor be able to check the information of different medical tests, even if those were performed in different clinics, countries or languages? Data might be distributed and be property accessed by different entities. Medical staff consider mandatory seeing the result of old tests to compare and decide the better treatment or procedure for the patient.
Therefore, doctors have to be provided with different types of information in the same place: the patient’s lifetime clinical history, clinic images, informed consents and data from a wide range of devices such as wearables, mobile applications, electromedical devices, etcetera. Such information is distributed in most cases, and has to be retrieved for the doctor on demand in real time. This improves the doctor-doctor and patient-doctor relationships.
Connecting all the nodes of the health care system, public or private, creates a plexus of information which increases the success rate, reduces complications and drops the health care costs for individuals, health care insurances and governments.
An easy to configure and universal black box is needed by a wide variety of devices, clinics and hospitals to analyze as much information as possible in real time.
This tool is called Enigma Connect and connects medical devices that speak DICOM, HL7 and IHE which are worldwide standards in health care. It allows Enigma Connect to interact with professional medical devices developed by brands such as Philips, GE, Abbot, Roche, etc. It is being currently tested in Spain, one of the leading and most efficient Health Care Systems in the world.
Understanding how payers make coverage policies on genetic tests: The New UCSF Payer Coverage Policy Registry
Kathryn Phillips, PhD
Coverage and reimbursement of new technologies is essential, but often lacking particularly for personalized medicine. This presentation will describe our new UCSF Center for Translational and Policy Research (TRANSPERS) Payer Coverage Policy Registry, which systematically examines what tests are covered or not covered by payers, what factors are considered in coverage decisions, and how coverage policies vary. This is the first systematic registry of private payer coverage policies focusing on genetic tests, and includes data on multiple payers and tests across a range of testing indications.
I will describe the Registry and discuss initial findings on coverage for multi-gene panels and sequencing technologies. A paradigm shift has occurred as genetic testing has shifted from single-gene tests to multi-gene panels and sequencing technologies that allow (relatively) inexpensive and rapid testing for multiple genetic variations. As of 2015, there were 55 relevant policies from the largest five private payers. Coverage varied across tests and payers, and there were no payers covering panels for drug metabolism testing or whole exome/whole genome sequencing. I will also describe an example of Registry findings provided by our study in Nature Biotechnology (Clain, 2015). We found that although payers cover single gene BRCA1/2 single-gene testing for high risk individuals, many payers consider panels investigational or experimental. Although 76% of payers have coverage policies about panels, none of these policies provides positive coverage
I will conclude with a discussion of how payer coverage policies can be best understood in the context of a changing health care system. This discussion will be relevant to other emerging technologies in addition to personalized medicine.
The UCSF TRANSPERS Payer Coverage Registry was developed with a team of collaborators from multiple institutions (UCSF, Tufts Medical Center, American Institutes for Research, and Center for Business Models in health care), with funding from the National Human Genome Research Institute (R01HG007063). Launched in 2008, TRANSPERS is a first-of-its-kind research center dedicated to developing evidence-based information for patients, providers, industry, researchers and policymakers to objectively assess how personalized medicine can be most beneficial and efficient in improving health outcomes. The TRANSPERS Center has been funded by grants from NIH and several foundations.
Community governed health care: Oregon’s Coordinated Care model
Jim Rickards, MD, MBA
The State of Oregon developed the Coordinated Care Model in 2011 as a new way to deliver health care services to its nearly 1.1 million Medicaid members. As a result of state legislation and a federal waiver from the Centers for Medicare and Medicaid Services, Oregon called for the creation of legal entities known as Coordinated Care Organizations (CCOs). The 16 CCO’s in the state now serve essentially as Medicaid managed care plans in the traditional sense. However, these organizations are much more than health plans.
Unlike traditional health plans, CCO’s pay for medical, behavioral and dental health care services under one fixed global budget. Additionally, these plans are governed by members of the community they serve. Their board of directors are required to have leadership from local hospitals, behavioral health organizations, government, providers and most importantly members served by the plan.
The Yamhill Community Care Organization is one of Oregon’s CCOs which has been incredibly successful in delivering community governed health care. The health care providers and Medicaid members of this community played an active role in the development of the organization, realizing the potential benefits of a health plan which was actually governed by the providers for the plan and the members served by the plan.
A Community Advisory Council (CAC) composed of health plan members and their families is one of three main governing bodies in the organization. The CAC has produced a large amount of meaningful work such as a Community Health Improvement Plan which serves as a blueprint for improving the health not just of the Medicaid population served by the plan, but also the broader community. The Clinical Advisory Panel (CAP) is another of the main governing bodies comprised of local providers including physicians, dentist’s and behavioral health providers. They have produced work such as the development of a Persistent Pain Program to serve as a multidisciplinary approach to hep manage chronic pain and reduce opioid use.
The Yamhill CCO now serves as a platform for coordinating care in the community as well as fostering health care innovation and transformation . New relationships between providers have been developed such as between public health and primary care providers which allow them to collaborate on community initiatives, track outcomes with a common set of metrics, and pay for care using a value based alternative payment model.
Additionally, the organization allows for rapid deployment of novel services. An example is a primary care clinic based tele-dermatology program. In this program, iPads were placed in primary care clinics allowing for consultations to be performed virtually during an already scheduled visit. Prior to this, only a single dermatologist was available with limited access. Another novel program has funded placement of behavioral health providers in primary care clinics to address behavioral health determinants.
Not just “tilting at windmills”: The role of communication and collaboration in the statistical review process
Multiple studies have demonstrated the ongoing problem of methodological errors in the biomedical medical literature, with the availability of statistical reviewers a related challenge. Errors in published articles may go unnoticed because of author and reader lack of knowledge of statistical methods. Furthermore, journal editors frequently may not recognize statistical errors during the peer review and editorial processes. In 2005 Ioannidis published his much cited and discussed article “Why Most Published Research Findings Are False,” in PLOS Medicine. However, since that time concerns regarding the lack of reproducibility in science, and related discussions of the need for statistical rigor remain; affecting “large” and “small” journals in science and medicine. Lack of sufficient emphasis on rigorous statistical review can lead to highly publicized retractions and the attendant fallout. Inclusion of statistical checklists in the Instructions for Authors is generally ineffective and whereas many journals endorse various reporting guidelines (eg, STROBE, SQUIRE, CONSORT etc.) editors may not enforce a requirement for adherence, and submission of a completed checklist is not an indicator of study quality.
This presentation will highlight efforts to implement a rigorous statistical review process at the Journal of the American Veterinary Medical Association (JAVMA), the most widely circulated clinical veterinary medical journal in the world; an effort that formally commenced in 2013. Statistical review was available prior to 2013 but was generally performed on an “ad-hoc” basis, in part because of a lack of resources (ie, a very limited pool of statistical reviewers); in part because, as for many medical journals, it may have been unclear that there was a greater need for statistical rigor.
From the outset particular emphasis was placed on engaging in a highly collaborative process, valuing the the contribution of all involved, acknowledging each individual for their willingness to submit to the process, and with the editor (this author) being available for feedback and discussion. It was emphasized to authors that this was not about “finding mistakes” and statistical reviewers (who volunteered their time and all of whom were highly experienced) also received frequent communication versus form emails only. Whereas this has required considerable commitment, we have found notable success and enthusiasm from authors, biostatisticians, and members of the profession. It is our opinion that supportive and respectful communication may be valuable in promoting engagement and commitment to a rigorous statistical review process. A small number of comments can require an extensive amount of work as well as continued input from volunteer biostatistician reviewers. Nonetheless, after approximately 3.5 years a variety of examples of progress are evident because of the engagement and hard work of individuals with a shared passion and respect for the process, and appreciation for the effort of all involved. This has not been easy, or without obstacles. However, we believe that pursuing this is the right thing to do. Our patients deserve this. I hope that by sharing some examples of this process from our journal it may be helpful to many others working to improve statistical rigor and the quality of the peer-reviewed biomedical literature.
High tech for high touch healing: using digital tools to blend conventional and complementary medicine for chronic disease patients
Bonnie Feldman, MD, Robin Berzin, MD, Lena Cheng, MD
The Precision Medicine Initiative and Vice President Biden’s “moonshot in cancer” renew Federal focus on medical research. The convergence of health care and information technology—especially advances in data collection and analysis—is accelerating research in genomics, immunology, microbiomics, and systems biology. These developments are sparking unprecedented innovation in health care, enabling us to dream of a future where every person gets the right care at the right time, even before disease strikes.
Despite these new tools, chronic disease is epidemic, especially among young adults and children, who face a lifetime of suffering. Vague and debilitating symptoms are aggravated by confused and disconnected care. A major patient frustration is the lack of care coordination across medical specialists, even more so for complementary interventions like diet, exercise, and meditation. Results from our Stanford Medicine X 2015 survey of autoimmune patients reflect these cries for help, which are also shown in other patient communities.
“It took 7 years and 13 doctors to even TEST for autoimmunity. I feel cheated out of so many years of my life.”
“I would like a team of healers working together, ‘looking at the body as a whole system’ to determine diagnosis and best outcome for each patient.”
This panel is an opportunity for Stanford Medicine X’s empowered patients to lead in the integration of complementary and conventional medicine to help reverse the accelerating growth of chronic diseases.
Inspirational entrepreneurs developing innovative delivery approaches will highlight how they are tackling chronic disease management in new and different ways.
Doctor on Demand gives consumers access to telemedicine consults at the push of a button.
Parsley Health focuses on prevention with a novel, subscription-based wellness practice that incorporates digital tools and coaching.
Innovation and consumerization of health technology: From research, to data science and the view from outer space!
Bhargav Sri Prakash, Bernard Harris, Rema Padman
Innovation in the world of consumer-grade health technology is complex. Sustainable success in this domain needs an amalgamation of design-thinking across disparate disciplines. This is essential for the product to be accepted by a wide range of stakeholders, while also being able to compete for consumer attention and withstand regulations, to deliver sustainable impact at scale. Innovation and startups tend to perfect linear solutions to target rapid adoption. The multidimensional complexity also becomes difficult to accept for rational early stage B2C investors, leaving a void in models for the funding of consumer grade health technology. This multidisciplinary panel represents a group of experts ranging from a former NASA Astronaut and Physician, to a data science researcher, a business leader and to a mobile health startup founder, who have collaborated across domains. The focus of talk is about lessons learned through an experience of collaboration and building towards a strategic commercial opportunity for scalable innovation in consumer-facing health.
Through the Looking Glass
This cannot be happening. This is not real. Those were the thoughts running through my head when I got the call from my 5 year old daughter’s pediatrician, after a minor fall. “We found something on the x-ray. We are not sure what it is, but it looks concerning. We made an appointment for you in pediatric oncology at Lucile Packard Children’s Hospital (LPCH) for tomorrow.” I hung up the phone, stunned. After working for ten years as a nurse and later, as Director of Patient Safety at LPCH, it quickly became clear that I was going to walk a new path through my workplace – this time as a mother of a child with a rare disease.
Over the months and years of clinical practice, some hard truths have become known to me. Sometimes, we harm children when we provide care for them. With recent estimates placing medical error as the fourth leading cause of death in the United States, translating to about 400,000 preventable deaths a year, the risk is substantial. Our traditional models for eliminating harm in hospitals has been to rely on the attention, vigilance and dedication of staff to keep patient safe. But our staff are human, and they will make mistakes. Our health care system is not designed with humans in mind – not for patients or for providers. That disconnect between design of the system and the human that must operate within it contributes to harm, forcing the caregiver to adapt to the environment that leads to errors. A revolution is needed in how we organize and provide health care. Human centered design, the reason an iPhone can be navigated competently by a toddler, is what we need to strive for in health care.
Industries such as aviation and nuclear power have dramatically improved the safety of their systems and outcomes, but these lessons and environments do not intuitively translate to health care. Out of profound respect for the patients I have cared for, and after observing my daughter on her health care odyssey, I am on a journey to understand human behavior and translate that to safe care. Consider the circus. How does the Cirque du Soleil execute death defying acts twice a day, 6 days a week with shows, sets and employees scattered across the globe, with rare harm? The answer is in the design. Designing with the performer in the center, thinking through all the possibilities for failure and designing systems to consider, address and adjust all those possibilities.
In health care, we perform death defying acts everyday. We do microsurgery on the brains of tiny newborns, we transplant organs, we cure disease. We do all of this in systems that were not designed with the human “performer” in the center. Our challenge now is to apply the lessons of human centered design to health care so we may someday be assured that the care we provide heals and doesn’t hurt our precious patients. Like my daughter.
Elevar Labs Helps Large health care Organizations Implement Innovation In “Lean” Fashion – Applying Entrepreneurial Thinking, Connecting Enterprise and Startup Partnerships and Transforming Digital Health Technology Execution
Elevar Labs address our most pressing health care needs by crowdsourcing innovations from talented digital health startups to address the needs of large hospital systems, health plans and pharmaceutical companies. Enterprises looking for creative solutions to their most pressing needs “Reverse Pitch™” their challenges to digital health entrepreneurs, who compete to showcase the most relevant and effective solution.
Identifying the right invention and technology partner is hard, but successful implementation is much harder. “Reverse Pitch” is the first and only program of its kind, bridging innovation and implementation and aligning startup products to specific industry needs. Moreover, the Elevar Labs innovation program was designed with execution in mind. We present a recent Elevar Labs case study with EvergreenHealth, a large hospital system in the Pacific Northwest, highlighting how Elevar Labs has streamlined a multi-year sourcing and implementation effort to 90 days, transforming how large hospital enterprise can engage digital health entrepreneurs to solve our most pressing health care problems.
Authenticity: the ruby red slippers
Appropriate use of technology to achieve the goals of personal integrity (health) or actuarial efficiency (cost-effectiveness) is dependent upon the authenticity of the categories engaged to organize and act upon data. Categorical evidence applies interventions to existing categories as a tactical approach, while case-based evidence explores the strategic change of developing new categories demonstrating coherence with newly discovered principles of nature. Naive rationalisims are recognized with failure to achieve expected outcomes and generation of unanticipated problems consequent of inauthentic organization of data. While information technology and artificial intelligence provide tactical advantage, it can be questioned if they are capable of discovering the latent variables and principles necessary to replace naive constructs with with authentic understanding.
Integration of natural intelligence, intuitive to the patient/physician relationship, with the speed, scope and accuracy of digital technology is crucial for appropriate applications that scale discoveries made in practice to the social project of cost-effectiveness facilitated by discovery of authentic models demonstrated to enhance personal integrity. We have utilized case based investigation to explore metabolic disease exposing that reliance upon normality as a definition of health to be naive while recognizing that metabolism is authentically understood as the complex organization of heat that is the foundation of bi0logical signalling. Validation of the algorithmic graphs generated from N of 1 investigation has been demonstrated with the induction of remission in ten consecutive patients with refractory Grave’s disease utilizing repurposed interventions revealing pathogenesis to be disruption of a primitive metabolic system that contributes to thyroid health that also serves as a foundation for evolution of the adaptive endocrine and immune systems that emerge with terrestrial adaptation.
Grave’s disease can be recognized as an authentic category in the context a general theory of metabolism that engages the evolutionary model, but the concept of autoimmunity as an authentic category is called into question. Rather than being failure to distinguish self from non-self, Grave’ and probably other conditions considered to be autoimmune are mediated by signals and mediators of the primitive endocrine system that, though superficially similar to those of the adaptive systems, are independent of them. The primitive and adaptive systems are in competition for dominance in the organization of metabolic health and the expression of disease, revealing a more authentic strategy for categorization and appropriate intervention than that based on the principle of homeostasis in the organization of heat.
The general theory of metabolism developed during the practice of medicine is similar to the authenticity represented by the red slippers that get Dorothy back home.
The collaborative process of creating the cystic fibrosis care model of the future
Imagine a system of Cystic Fibrosis care in which the average patient health-related quality of life is no different from that of the general population, in which people with CF and their families are able to achieve their stated goals, and in which the median age at death has doubled from 27.5 years (2013 data) to 55 years. The CF Foundation has been a driving force behind the therapeutics that might increase longevity and there are dozens of initiatives including quality improvement and thousands of people working tirelessly in the fight against this disease, yet we are not where we need to be. What will it take to get there?
To answer this question, the CF Foundation sponsored an effort to implement the Collaborative Chronic Care (C3N) Model to redesign cystic fibrosis care and create the CF care model of the future. The CF community, in partnership with the CF Foundation, worked through a design process that took place between July 2014 and December 2015. Through this process we have formulated a transformative design for the current care system that performs substantially better than is possible today, including a collaborative innovation network – of people with CF, parents, clinicians, and researchers – dedicated to this shared vision, a conceptual model for how to achieve this vision, and a set of design concepts that together could bring about this new system.
We believe that this model, in which we collaborate to learn from every interaction, conduct research, and implement the findings, will harness the motivation and intelligence of the entire CF community and make it easier for everyone to work together at scale to improve health, care, and costs for people with CF.
An important result of the design process was that it increased the degree of belief among participants that transformation is within reach, suggesting specific steps that could be applied to have an impact within a defined time period. We predict an impact on outcomes can be observed within 2-3 years in our pilot centers and transformation of care for virtually all people with CF over a period of 5-7 years.
Our panel includes an adult with cystic fibrosis, a parent of a child with cystic fibrosis, a pediatric pulmonologist, a behavioral scientist and a quality improvement consultant. We are prepared to discuss what we learned working together through the first phase of the implementation of the C3N model, and our plans as we move forward into the next phase, the development of our pilot learning network.
Implementation of tablets in the gross anatomy laboratory: Experiences and student attitudes at one year
Anatomy education is evolving to better prepare medical students for 21st-century medical practice. Instruction increasingly occurs as an integrated curriculum, emphasizing the connections between anatomy, physiology, disease, and management. Educational technology has been explored to overcome barriers in this curricular transition and to provide new learning opportunities. Mobile devices represent the latest frontier in this effort. However, understanding of how best to integrate tablets in the gross anatomy laboratory, along with supporting hardware and software, remains poor. Further, learners’ experiences, attitudes, and use cases for tablets in support of their learning have not been comprehensively evaluated.
We completed pilot testing followed by full-scale implementation of tablets in the gross anatomy laboratory, and aimed to evaluate students’ use of and attitudes toward this technology. An eight-week pilot assessed feasibility of Apple iPad use and identified facilitators and barriers to their use. Based on supportive results, iPads were integrated throughout the lab for first-year students. A survey was administered to learners one year after implementation.
Learners almost universally agreed that iPads were beneficial to their education (98% of respondents) and identified it as the best resource for appreciating 3D orientation of structures and answering questions. The dynamic, interactive, and immersive nature of touchscreen apps is well suited for image-based tasks, especially with the unique ability to directly manipulate 3D models. iPads also enabled novel learning opportunities, including real-time clinical correlation learning, ad-hoc quizzing, and use of photo and video documentation for self-review and peer teaching. The most significant barrier to effective use of tablets was student training in the provided apps.
Hardware and software choices significantly impact user experience. Rugged, waterproof cases successfully prevented device damage from falls and exposure to fluids. Screen mirroring to large, ceiling-mounted displays afforded the benefits of mobility and touch-based content manipulation of tablets in concert with easier sharing of content among multiple learners. Apps for anatomy education vary substantially in image quality, information completeness, and functionality; in our experience, Netter’s Atlas of Anatomy and Visible Body 3D were exemplars in all three domains.
Tablets provide unique benefits to gross anatomy laboratory education, performing better than traditional resources on certain tasks, and create novel learning opportunities in the lab to integrate anatomic, basic science, and clinical knowledge in real-time. Our experience also demonstrates how technology can make the anatomy educational experience more collaborative, personalized, and empowering. Additional study is necessary to evaluate the impact of tablets on educational outcomes.
Using personalized digital health behavior change to manage asthma
Digital health interventions have tremendous potential to help patients with chronic health conditions manage their symptoms and stay on their medication regimens. For asthma patients, adherence to controller medications is a significant problem. In addition to increasing the risk of asthma attacks, lower controller adherence also increases the use of rescue inhalers resulting a series of unwanted side effects. To help patients better manage their medications, MEMOTEXT, in conjunction with PerformRX and AmerihealthDC, developed HealthNHand, a pilot digital personalized adherence and support program for asthma patients with the goal of improving adherence to daily controller medication while decreasing the need for rescue inhalers.
Using real time data from patient self-report (inc. mood, quality of life, perceptual barriers to adherence) and objective data sources (e.g prescription claims data, real-time blood glucose levels), HealthNHand provided patients with personalized and targeted support as well as daily air quality forecasts. Using this data-oriented personalization approach, controller medication adherence improved in more than 50% of patients who entered HealthNHand as poor adherers. Even more encouraging, over 80% of patients who were high rescue inhaler users prior to enrollment reduced their use while participating in HealthNHand. The program had a strong retention rate of 87.5%.
This pilot program showcases the power of digital health interventions to improve the lives of patients with chronic illnesses. The use of similar interventions,which tap into the power of patient data, in other chronic conditions should be explored as scalable, efficient ways to improve patient outcomes.
Advanced Learning X-Model using Augmented Reality (AleXandria) Medicinae Gallery: A Pilot Model for Medical Education
AleXandria (Advanced Learnin X-Model using Augmented Reality) employs a Virtual Reality (VR) and Augmented Reality (AR) platform for use with a head mount. This software, which will accompany Google Cardboard and Expeditions programs, will be compatible with phones utilizing an android or iOS operating systems.
AleXandria will contain different galleries to offer free open online courses, ebooks, 360o photospheres, 3D images, 3D videos and video lectures combined with sounds, self-assessment assignments and tests, simulation training, and the opportunity to interact and brainstorm with other students around the globe
The AleXandria Medicinae Gallery was created by doctors, medical residents, and high school students from the United States, Mexico, and India with one single purpose–providing medicals students with the ability to immerse in entirely new experiences while they are learning medicine.
- To design a comprehensive system that increases the accessibility and cost-effectiveness of medical education
- To target and benefit underdeveloped countries with minimal resources and contribute to more immersive health care educational experiences
- To implement VR and AR simulations for medical coursework to create a more experiential interaction with a consolidated base of knowledge
- To expand the ubiquity of simulations in medical education, whereby we can improve the learning experience of individuals around the world in all capacities of health care
AleXandria brings cohesion and unprecedented depth to a medical education in order to empower students. Through VR and AR, educational objectives can be blended together to provide a gateway to academic breakthrough. Going far beyond mere comprehensiveness of material, AleXandria can help students come back to the roots of learning by simply allowing their curiosity to be the catalyst of their educational advances. The structure of lesson plans, review exercises, and tests will transform from following a pattern of recognition and recall to embracing a core foundation of an insightful, beyond-the-textbook kind of thinking.
We are creating the beta version of the app for medical schools to test next spring. We will invite renowned doctors and visionary medical students throughout the world to collaborate by creating case scenarios and educational material. The applications and programs will provide various simulations for students, from simple anatomy classes to complex clinical case scenarios, so they can envision themselves in real medical situations. In the process, they will gain access to patient information, laboratory results, and radiological scans, after which they will be able to delineate a plan of care for the virtual student.
After the beta release, we will provide teachers with tablets that can guide up to 50 students wearing VR viewers utilizing the Expeditions Pioneer model. Students will be able to interact with editable notes and take virtual tests.
Creating a viable system to prevent or treat cancer-related sexual problems
Over 60% of long-term cancer survivors end up with sexual problems, yet only 20% ever get professional help. Our medical system does a poor job of assessing or treating sexual problems related to chronic illness or aging. Cancer is just one example. Overburdened clinicians are starved for time and receive minimal training in discussing sexual topics. Surveys of patients agree that the majority want doctors or nurses to bring up sexual issues. They want information not only about erections and orgasms, but about self-esteem and relationships. Yet surveys of health professionals conclude they consider sex important, but rarely bring it up unless the patient initiates the conversation or unless a risk of damage to sex is part of informed consent for a treatment. A 2014 practice guideline from the National Comprehensive Cancer Network suggests repeated assessment of sexual problems with questionnaires, exams, and bloodwork from the time of cancer diagnosis through survivorship. However, their algorithms are poorly conceived and could not be implemented, given that over half of patients in a typical oncology clinic have a sexual concern. A recent guideline from a group of gynecologists in the journal CA advocates an exquisitely detailed pelvic exam for women that would take 45 minutes, yet barely mentions history-taking or counseling. Such procedures would not be covered by insurance if done during a routine oncology visit. Our Technology Hub will demonstrate an online system of care for cancer-related sexual problems, including a portal web site and separate interventions for men and women that offer education about sexual side effects across a wide range of cancer sites and treatments; specific self-help strategies for problems such as loss of desire, erectile dysfunction, vaginal dryness and pain, and incontinence during sex; help with dating, relationships, and sexual communication; basic facts about sexual anatomy and response for men and women; and video stories. We developed our interventions with fast-track small business grants from the National Cancer Institute. We will address difficulties encountered in research, such as slow recruitment, participants refusing to fill out questionnaires about sexual function, and a common hope that problems can be solved with a magic pill. We will present data on the amount of time participants spend on the intervention sites, and the type and frequency of counseling that enhances outcomes compared to self-help usage of the intervention sites. We will demonstrate our innovative goal-setting and tracking feature that guides users in setting priorities for knowledge, problem-solving, and improving relationships, as well as our efforts to address relapse prevention. We will also show that our program contributes to a multidisciplinary, patient-centered model of care, rather than relying exclusively on peer support, counseling, or medical options.
From innovation to realization: What it really takes to achieve transformational outcomes.
Change is all around us. Indeed, it is the only constant! In a continuously evolving health care industry, we have all experienced change in our organizations. Internal forces from new leadership, new technologies, cost pressures and growth, as well as external pressure from competition and regulatory bodies, continually spark massive initiatives for organizational change. Our companies are investing millions in driving transformational outcomes, yet there is often a disconnection among initiatives and a growing fatigue from duplicative efforts. Ultimately, 60 percent of change initiatives fail.
Using case studies of operational transformation across global organizations as well as examples from participants, our workshop observes common pitfalls and challenges and examines our best recipe for manifesting true success: An interdisciplinary approach, where process excellence, change adoption, innovation, portfolio management and organizational effectiveness are integrated together in a holistic way, keeping people at the center of focus.
People’s concerns must be addressed. Over the years, we’ve observed these common needs:
- Clarity, vision and benefits – “Why should I bother?”
- Information, tools and support – “How can I do this?”
- Action taken in response to their feedback – “Did you hear me?”
- Impact, consistency and sanity – “Don’t waste my time!”
Using a hands-on approach, our workshop delves into the nuts and bolts of implementing operational transformation, giving participants people-centered tools to ensure greater outcomes with change. Far beyond project management, we will investigate process excellence, adoption, and leveraging an interdisciplinary team to arrive at a roadmap for success.
How to rock the boat and stay in it: The School for Health and Care Radicals
My name is Helen Bevan. I’ve been a health care rebel inside the English National Health Service for 25 years. I’d like to talk at MedX about building a movement of health care rebels.
The first principle of MedX is “lead as health care rebels”. Anyone who challenges the status quo in health care doesn’t choose an easy life. It’s tough being a change agent particularly when you feel like you haven’t got the authority or other people don’t always want to change. Yet big change happens in health care only because of passionate people who are willing to take responsibility for change.
That’s where the School for Health and Care Radicals (SHCR) comes in. It’s an online school, free of charge, backed by the world’s largest health organisation: the English NHS. It’s a platform for health care rebels to learn together, using powerful, guided learning which also qualifies as continuing professional development. It’s more than a school — it’s a community of like-minded people across the world. By April 2016, 10,000 people from 44 countries will have taken part in the school; patients, families, students and clinical trainees, nurses, doctors, allied health professionals, support workers, researchers, teachers and managers. There are people from local government and a surprising number of police rebels in the school. Here’s a blog from citizen activist/rebel, Jon, who shows that “there is no such thing as an outsider at SHCR” http://bit.ly/1QUMQA2 and from Elissa, who describes the school as “one of the most inspiring educational experiences in my 10 years as a doctor” http://bit.ly/1P1cNeD
The school’s built on the belief that:
- bottom up, grassroots engagement in change is as important as top down leadership of change
- if we are to significantly improve our health care systems we must value diversity and divergence as highly as conformance and cohesion
- We must invest resources in developing “leaders everywhere” as well as leaders of organisations and professions
Right from the start of the school, the level of engagement, enthusiasm and feedback spoke for itself. We won the global “Leaders Everywhere” challenge sponsored by Harvard Business Review and McKinsey and the school was named in “Britain’s 50 New Radicals” list by the Observer (Guardian) newspaper.
However, our views were validated through the report of the external evaluation of the SHCR from the Chartered Institute of Personnel and Development (UK). This showed a statistically significant effect on every measure of impact measured at both individual and organisational level:
- Knowledge of change and improvement
- Sense of purpose and motivation to improve practice
- Ability to challenge the status quo
- Rocking the boat AND staying in it
- Connecting with others to build support for change
The CIPD evaluators said they had never before evaluated a learning intervention where there was an impact on EVERY measure.
The SHCR is a blueprint for health care rebels across the globe
A parent and pediatrician discuss how parents and clinicians co-created improved outcomes for children with complex heart disease
In this session, a parent and a pediatrician partner will discuss the powerful impact of the collaboration between the 55-center multi-institutional National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC), and Sisters by Heart (SBH), a mother-led parent support and advocacy group. Clinicians and parents set about to change the way care is delivered for infants born with “half a heart”(HLHS). As a result of this collaboration, care processes and outcomes have significantly improved, including a 45 percent reduction in mortality across care centers. We estimate that this represents 31 lives saved since the summer of 2013 (or the equivalent of a classroom of kindergarteners). When clinicians partner with parents in a real way, empathy is built and change happens.
NPCQIC was created in 2007 to improve care and outcomes for infants born with “half a heart” (HLHS). Key network objectives were partnering with parents, eliminating growth failure, and reducing mortality. Multidisciplinary teams include cardiologists, nurses, dieticians, and others who submit data to a population registry. Data is collected on clinical care processes and health outcomes, and shared in monthly webinars and semi-annual face-to-face learning sessions. SBH is a group of ‘heart moms’ who met online in 2010 following their infants’ second of three open-heart surgeries, and launched a non-profit organization to reach out to and support families of infants with HLHS. SBH has developed a growing Linked by Heart (LBH) database of families of children with HLHS, and a national system of regional coordinators and parent outreach. NPCQIC and SBH began collaborating in 2012. Parents are now key partners with NPCQIC, serving in network leadership roles, co-producing the care and research workgroups, driving the data transparency agenda, co-creating tools, and leading learning sessions and monthly calls. This has led NPCQIC/SBH to take on an expanded set of goals involving surgeons and intensivists and beginning at the child’s diagnosis, often during fetal life, and continuing to the first year of life. This second phase will have an important focus on improving support for families.
NPCQIC/SBH is one of five learning networks (LN) supported by Cincinnati Children’s Hospital Medical Center. Others focus on chronic disease, perinatal care, and safety; all have improved outcomes. LN involve patients, families, clinicians and researchers and use data for both improvement and research. LN enable improvement, innovation, and discovery.
Research Presentations (26)
Personalized medical decision-making
Personalized medicine, the concept of using patient-specific information to make treatment decisions, has the potential to revolutionize medical care. However, learning which treatments are effective on which patient subpopulations remains a challenging statistical problem, particularly in the regime of “big data” (availability of many patient covariates).
We develop a new statistical decision-making algorithm for this problem and apply it to the task of warfarin dosing. Warfarin is the most widely used oral anticoagulant agent in the world, but correctly dosing warfarin remains a significant challenge since the appropriate dosage is highly variable among individuals (by up to 10x) due to patient-specific factors. However, an incorrect initial dosage can result in highly adverse consequences such as stroke or internal bleeding. Thus, we tackle the problem of learning and assigning an appropriate initial dosage to patients by leveraging patient-specific factors.
We formulate the problem of personalizing treatment choices as a multi-armed bandit with high-dimensional covariates. We develop a new statistical decision-making algorithm and prove theoretical guarantees that it achieved near-optimal performance.
Next, we evaluate our algorithm on warfarin dosing using a public patient dataset made available by PharmGKB. The data contains patient-specific optimal warfarin doses for 5,528 patients, as well as 93 patient-specific covariates including clinical factors (diagnosis, medications, etc.), demographics (gender, age, etc.), and genetic information. Our algorithm sequentially assigns low, medium, or high dosages to patients based on their clinical characteristics, observes the patient’s response, and learns the effectiveness of the dosage choice on different patient subpopulations. We compare our algorithm to standard physician practice, which starts all patient on a medium dose (appropriate for most patients), as well as existing bandit algorithms.
Our algorithm assigns the correct dosage for 65% of the 5,528 patients, while the physician policy assigns the correct dosage for only 54% of patients. These gains are primarily achieved because our algorithm correctly doses 57% of low-type patients (33% of the population), while the physician policy always assigns them the (wrong) medium dose.
Furthermore, our algorithm significantly outperforms existing bandit algorithms, particularly when the number of patients is small. For example, when there are 500 patients, our algorithm achieves 60% accuracy while the existing algorithm only achieves 41%. These gains are achieved by our algorithm’s ability to quickly learn in high-dimensional settings (many patient covariates).
Personalized medicine can revolutionize medical treatment decisions. We provide a statistical decision-making algorithm that can aid physicians in making these choices, while simultaneously learning about heterogeneous treatment effects.
Unintended consequences of Medicare pay-for-performance
Recent Medicare pay-for-performance policies aim to improve patient care quality. One focus has been reducing the incidence of hospital-acquired conditions (HACs), which are considered largely preventable. Medicare started the (i) HAC nonpayment policy in 2008 (discontinued payments for HACs), (ii) the HAC Reduction Program in 2014 (instituted financial penalties for hospitals with high HAC rates), and (iii) tied Hospital Compare quality metrics to HAC rates. However, these policies may not have their intended consequences if some hospitals lack the capability to identify HACs or to distinguish between HACs and conditions that are present-on-admission (POA). In fact, the new legislation may unfairly penalize hospitals with better infrastructure for accurately reporting HACs. We examine whether incorrect reporting occurs.
Some states regulated adverse event reporting systems prior to 2008, and typically included measures to ensure accurate HAC reporting (e.g. through audits and financial penalties). We refer to these states as “strongly-regulated” and term the remaining states “weakly-regulated.” Strongly-regulated states have greater incentives for truthful reporting as they face both federal and state regulation. We find evidence suggesting that these states have higher quality of care (measured by publicly reported quality metrics) and better POA detection capability (measured by compliance with quality metrics that require timely response).
Using a 5% random sample of Medicare claims data from 2009-2010, we examine differences in (risk-adjusted) POA and HAC reporting rates between strongly- and weakly-regulated states. We use regression to measure the effect of additional state-level regulation on reported infection rates. We control for patient-level risk factors and use instrumental variables to account for the possible endogeneity of regulation.
We find that state-level regulation causes decreased (risk-adjusted) POA reporting rates and increased (risk-adjusted) HAC reporting rates. While either result can be due to unobservable patient risk, this cannot simultaneously explain both results, i.e. if patients in weakly-regulated states are more susceptible to infection (despite risk adjustment), they should have higher HAC reporting rates; if they are less susceptible, they should have lower POA reporting rates. Therefore, these results suggest that hospitals in weakly-regulated states either (i) fail to report HACs or (ii) over-report HACs as POAs. We estimate that there are over 10,000 over-reported POA infections a year among weakly-regulated states (20% of their total reported POAs), adding a cost burden of $200 million.
Even with electronic documentation, hospitals may still incorrectly report quality metrics. Understanding how incentives influence reporting quality is crucial for designing effective policies. We suggest targeted HAC auditing and improved federal regulations on reporting systems.
Doctors who ordered this also ordered… OrderRex: Data-mining electronic health records for clinical decision support
High-quality, precise medical practice is challenging in the face of uncertainty when the majority of clinical decisions lack adequate evidence to support or refute their practice (e.g., only 11% of clinical practice guideline recommendations are based on high-quality evidence). Pervasive practice variability then compromises both the quality and cost-efficiency of health care (e.g., patients receive only 55% of evidence-based recommended medical care). Clinical decision support like order sets help distribute expertise, but are constrained by resource intensive manual development.
To overcome scalability limitations by automatically generating decision support content from existing practice patterns, analogous to Amazon.com’s product recommender. To perform the first structured validation of such a system against external standards-of-care and outcome predictions.
We extracted deidentified electronic health record data from all hospitalizations at Stanford Hospital in 2011 (>5.4M structured data items from >19K patients) to build a system with association statistics for 811 clinical orders (e.g., labs, imaging, medications) and clinical outcomes. We manually reviewed the National Guideline Clearinghouse for diagnoses of chest pain, gastrointestinal hemorrhage, and pneumonia. We compared system generated clinical orders against guideline referenced orders by receiver operating characteristic (ROC) analysis. Human authored order sets provided real-world benchmarks. We compared predicted vs. actual outcomes by ROC analysis for separate validation patients.
System generated orders were overall consistent with guidelines (ROC AUC c-statistics 0.89, 0.95, 0.83) and improve upon statistical prevalence (0.76, 0.74, 0.73) and pre-existing order sets (0.81, 0.77, 0.73) (P
Automatically generated order suggestions can reproduce and even optimize manual constructs like order sets while remaining largely concordant with guidelines and avoiding inappropriate recommendations. This has even more important implications for prevalent cases where well-defined guidelines and order sets do not exist. The same methodology is predictive of clinical outcomes comparable to state-of-the-art prognosis models (e.g., APACHE II), pointing to opportunities to link suggestions against favorable outcomes.
Understanding online conversations: where, how, and why to identify the right online influencers for effective health strategies
Where do patients turn for information when not in front of their health care providers (HCPs)? Online, of course. One of the biggest changes as a result of an Internet-enabled world is that HCPs are no longer the sole sources of health information. However, the 1:9:90 model of online behaviors tells us that only 1% online are creating content; 9% share and repackage content; and 90% primarily listen and learn. To influence the majority of people, first effectively reach and engage the 10%.
Studying online posts categorized by hashtags will help identify how to identify the 1% creating content, plus the 9% sharing and repackaging content to distribute to their communities – key information for creating effective health communication strategies to target the appropriate audiences.
To illustrate this with a practical example, an analysis was performed over a three-month period (June 1-August 31, 2015) to compare engagement levels by HCPs, media, and other individuals, from tweets with a variety* of diabetes-specific hashtags: ranging from generic hashtags to hashtags that “flag” posts, in addition to scheduled community hashtag chats and conference hashtags. During that time period, there were 46,321 tweets with those hashtags from 3,387 unique individuals. The following analyses were performed on the data set: hashtag usage; mention patterns and interactions; link and domain sharing patterns; and N-grams by 1, 2, and 3-word frequency – all by volume and audience.
Generic: #diabetes, #t1d, #type2diabetes, etc.
“Flags”: #dblog, #WeAreNotWaiting, #doc
Chats: #DSMA, #DCDE, #ourD
Conferences: #2015ADA/#ADA2015, #AADE15
All hashtags are not created, nor should be used, equal.
- #Diabetes is most used by all audiences, but patients and other individuals differ from HCPs and media by otherwise avoiding generic hashtags and instead frequently using hashtags around diabetes chats and communities (#doc, “diabetes online community”; #dblog, “diabetes blog”; #DSMA, weekly diabetes social media chat). HCPs frequently participate in conference-related hashtags, and less often directly engage in diabetes-specific chats
- Different audiences share content from different sources. HCPs are more likely than patients to post links, and they tend to post diabetes-specific news and general resource information being shared by health care brands
- 1-dimensional metrics are not enough to assess the quality and dynamic engagement levels in online communities. Some online users try to “game” the system by frequently posting their own links or overrunning hashtags. To find the 10%, you must use additional metrics to validate who is creating original content (that we wouldn’t consider to be spamming) and others who are sharing. The same approach can be applied to tracking “@mentions” of other people and organizations, to better gauge conversationality and influence on varying topics, and to help determine if they’re in the 10% (the combination of 1% and 9% groups for creating, sharing, and repackaging content to their communities)
- Influence should not purely be determined by number of followers or number of posts; the impact someone has on their network (regardless of size) may be even more meaningful. This methodology can help identify relative impact among individuals in a community or network
Conclusions This methodology shows that studying the content being shared across conversations and by different segments of health care, the channels (and hashtags) being used to distribute content, and the deeper dynamics of conversationality among community members, is key to enable the identification of influencers and the development of a more effective strategy. At a high level, this shows the consideration of individuals online based on their behavior and interactions is possible, and we no longer must solely rely on self-identification in online bios and follower counts to determine influence.
Real-time continuous glucose monitoring facilitates safety in older adults with type 1 diabetes: a qualitative analysis
Older adults with long-standing type 1 diabetes have a higher risk for hypoglycemia and hypoglycemia unawareness. Hypoglycemia can be dangerous, even fatal, and may result in concomitant falls, cardiac events, seizures, and/or hospitalizations. Tactics to avoid hypoglycemia in older adults are critical to promote safety and wellbeing. Technological Advances in the Treatment of Type 1 Diabetes identifies the importance of Real-Time Continuous Glucose Monitoring (RT-CGM) in effectively supporting diabetes management and quality of life in adult and pediatric populations. However, little is known about older adults and RT-CGM use. The purpose of this study was to identify why RT-CGM was important for diabetes management in both current and former RT-CGM users ≥ 65 years of age.
A convenience sample of older adults with type 1 diabetes participated in one of two online surveys about RT-CGM from January 1-31, 2016. The first survey queried individuals who were current RT-CGM users. The second survey examined individuals who were not currently using RT-CGM, but had a desire to do so. Descriptive data were analyzed by calculating numbers and percentages to describe the findings. A qualitative content analysis was conducted for the open-ended responses. Responses were coded and examined for themes both within and across coding categories. We organized our analysis into a codebook. The codebook was audited by two independent researchers.
A total of 22 participants (males = 11, females = 11) were included in this study, those using RT-CGM (n=11) and those who were not using RT-CGM, but desired to do so (n=11). Six participants who were not current RT-CGM users had used RT-CGM technology in the past. Participants were Caucasian, mean age 70 (± 4.7) years, diabetes duration 59 (±9.6) years, and self-identified as high technology users. Three major themes were identified: 1) RT-CGM facilitates safety by preventing hypoglycemia, 2) RT-CGM improves quality of life, and 3) access is a barrier to RT-CGM use. RT-CGM alarms and glucose trends allowed older adults to successfully avoid hypoglycemia. Participants’ ability to avoid hypoglycemia decreased worry about dying in their sleep or driving a vehicle, providing an overall sense of relief. Participants who were previous RT-CGM users, and now not using this technology, noted an increase in hypoglycemia-related concerns. Further, 88% who were not using RT-CGM experienced severe hypoglycemia events that required the assistance of another person in the last 12 months; hypoglycemia events often resulted in a fall or inability to operate a vehicle. Less worry about hypoglycemia and improved metabolic control from extremes in blood glucose levels supported quality of life.
To our knowledge, this is the first study to that examined the impact of RT-CGM among an older population with type 1 diabetes. RT-CGM improves safety and quality of life in older adults with type 1 diabetes by preventing hypoglycemia and associated injury and worry. Older adults without access to RT-CGM experience more severe hypoglycemia events that negatively affect their safety and quality of life. Improving access to RT-CGM in older adults is critical to improving health and safety, and demands more attention from stakeholders in diabetes care, including health care providers and insurers. RT-CGM is highly effective in younger patients with type 1 diabetes. This is a first look at an understudied population, older adults with type 1 diabetes, and how they can benefit from RT-CGM technology. Future RT-CGM research with older adults with and without comorbidities is needed.
Use of immersive learning to address the U.S. opioid epidemic
The United States is currently experiencing a public health crisis with regards to opioid analgesic overdose events and deaths. This is, in large part, due to a severe lack of education and training among health care providers with regards to safe opioid prescribing, risk assessment and monitoring. The objective is to use immersive learning as an educational tool to reduce harm to patients from unsafe opioid prescribing in the perioperative setting, teach risk factors for opioid aberrant behavior (OAB), and utilization of opioid assessment and management tools. The aims include the use of immersive learning to teach medical students and physicians in training to gather an appropriate history and physical exam in a simulated patient at risk for OAB, utilize the Food and Drug Administration Risk Evaluation and Mitigation Strategies, develop an accurate pain and opioid related differential diagnosis and plan, discuss their assessment with the simulated patient with empathy, and produce a clearly written dictation. The design uses an observational, prospective cohort. Each participant will complete a standardized patient (SP) based simulation focused on perioperative opioid prescribing in an SP with risk factors for OAB. Participant performance will be assessed from observation by an anesthesiology-pain medicine faculty with a performance check-list and review of their dictation. Clinical performance will be scored by the SP with a patient-provider interaction instrument. Each participant will complete a debriefing with an anesthesiology-pain medicine faculty. Participants will complete self-reported surveys on their opioid management every six months. After one year, a similar immersive experience will be repeated.
Not your average guideline: clinical pathway learning using patient-centered evidence
Clinical pathways adapt evidence-based recommendations from clinical practice guidelines (CPGs) to local practice workflows and are used by more than 80% of all US hospitals. They aim to reduce variations in treatments and support clinical decision making when faced with multiple or ambiguous care options, thus improving the quality of care and controlling costs. This research investigates data-driven clinical pathway development by analyzing patients’ demographic and detailed treatment data captured in electronic health records (EHR) as part of routine care delivery.
We derive clinical pathways from data by modeling the longitudinal treatment process, including office and hospital visits and laboratory results, as a dynamic Bayesian network. A novel representation of EHR data allows us to consolidate and temporally organize clinical activities of multiple categories in a succinct model. Sequential clustering is applied to the consolidated representation to identify latent patient subgroups. Furthermore, our model considers the differing durations for patients’ conditions and treatments to evolve, and allows identification of pathways that may improve outcomes. Variable selection incorporates domain knowledge and analytic techniques. The clinical pathway learning algorithm is generalizable to many domains and decision making settings, and is not limited by the number of variables or clinical categories.
The model and algorithm are evaluated using EHR data from 2009 to 2013 on patients with chronic kidney disease and associated comorbidities and complications. Results indicate that the algorithm learns the most probable course and length of treatment for patients, given their particular demographic and clinical conditions, including visit types, diagnoses, procedures, medications and duration between visits. In addition, preliminary results show that the algorithm can predict the profile of patients’ health conditions and expected treatments in the near future, up to 65% and 75%, with and without inter-visit duration, respectively, and false negative rate as low as 0% in test instances using leave-one-out cross validation. We expect further improvements with larger sample sizes and parameter tuning.
Significant diversity in patients’ EHR data poses a challenge for efficient pathway learning and prediction. While partly due to the nature of the disease and variability in patients’ conditions, it also suggests a review of practices, both for treatment variations and inconsistent EHR usage, for improved data capture. Future steps include evaluation of the derived pathways by expert clinicians and inclusion of medical costs and critical clinical outcomes into the pathway model. Data-driven clinical pathways have the potential to help health care providers review their current practices against CPGs, standardize them, and customize them into personalized, patient-centered pathways of care delivery.
Obesity management with patient engagement and gamification. Results from a large-scale nationwide network of cloud connected health kiosks.
Obesity management in underserved patient population has not shown long term sustained outcomes. Access to engaging tools to measure, track and interact with results are not readily available to underserved populations.
To examine the relationship between obesity and patient engagement with a nationwide connected health kiosk network.
De-identified historic data from a nation wide connected health kiosk network (higi SH, llc www.higi.com) was analyzed from September 2012 to May 2015. At time of this abstract submission approximately 10,000 ABP kiosks were deployed within the network. Only obese patients with initial BMI readings in the obese range and those who opted-in to share data for research purposes were included in the study. Level of engagement was defined as the total number of logins per month, achievements, or badges, earned on the gamification platform. Weight changes were defined as the difference between patients first and last reading on the kiosk network. Patient demographics, level of engagement with gamification platform and their weight trends were analyzed and correlation measured.
A total of 113,272 patients qualified the inclusion criteria for the study. The patients on the gamification platform earned a total of 898,130 achievements. There was a statistically significant difference in drop in monthly weight loss with number of logins per month by patients (p-value < 0.01). Patients with greater than 20 logins per month showed an average total weight loss of 5.35 Kg (p<0.01) and an average monthly weight loss of 0.45 Kg (p<0.01).
The results showed a statistically significant relationship between engagement on the gamification platform and weight loss.
Extracting adverse drug events from Twitter messages in real time using Naive Bayes classifier
Traditional reporting systems for adverse events (AE) have been slow in adapting to online AE reporting from patients. In the meantime, the growth and popularity of social media turned many patients and drug users to share their experiences with drugs online. Twitter is a social media service with increasing adoption and, although is limited to 140 character messages, can be a valuable source of AE related information. In this study, we describe the development and use of a real time system, that gathers AE information from users tweets. We compare the collected AE frequencies with those referred in the clinical trials of the drug and examine the results: are they a reliable source of information?
The system uses Twitter Search API to retrieve Tweets that contains a specific drug name, e.g. Xanax. We carefully choose up to 25 tweets to create a training set for use on the Naive Bayes (NB) classifier. NB classifier is fast and requires only a small amount of training data to estimate the parameters necessary for classification. Thus, is suitable for a real-time application. The software can run on a mid-size server making it fast and cost-effective.
The system periodically collects new messages. In each message, we apply the NB classifier and get a value between 0 and 1. This number represents the probability this message to refer to an AE. Finally, messages having values over a threshold create a set of AE incidents items.
Using the above described method, we searched for a specific drug word (Xanax) and extracted around 320 AE incidents, for a threshold of 0.6. Within these tweets, we counted the frequency of specific words (e.g. drowsiness, insomnia) coming from AE reported in placebo-controlled trials of the drug. Comparing the two frequencies gives us a glimpse on how reliable are the collected information: although there is a recognisable pattern between the two frequency tables, there are differences in the percentages of the observed AE.
This study proposes an innovative way to use well-known techniques, such as NB classification, to build a fast and cost-effective real time system for collecting AE incidents from social media platforms, such as Twitter. The system can automatically collect and report messages with information related to AE. A comparison between the frequencies of the AE in the messages and those reported in clinical trials, shows that although there are differences on the percentages (and, thus, the data cannot be considered as reliable), there is a pattern that indicates a possible correlation. Future work includes research for more drugs and AE as well as improvements on the NB classifier.
Leveraging econometric theory to detect adherence patterns in digital health social networks
Trevor van Mierlo
Digital behavior change interventions have shown much promise. However, many programs that are successful in experimental conditions suffer from high attrition in the general population. This presentation leverages two economic models to help illustrate how digital patients engage with online support groups.
Two periods of activity (July 25, 2008-August 7, 2012; Nov 15, 2005 – June 6, 2014) of actor and network-level data were extracted from AlcoholHelpCenter.net, a free-to-consumer, self-guided, patient-centric intervention designed to assist individuals cut down or quit drinking. In study period one, demographic characteristics and social network usage patters of 2584 registrants were analysed. Study period two assessed social network engagement patterns of 830 actors.
In period one, when comparing actors (n=449) to non-actors (n=2135), there were no observable differences in gender, age range, occupation, or level of education. However, there were statistically significant associations between social network use and engagement with tailored exercises (P<0.01). In period one, social network contributory patterns resembled a power curve, with a high R2 values (.962) and a statistically significant spearman correlation (.987, P<.001). In period two, social network patterns of engagement were analysed over 34 quarters. Number of actors (Mean=43, SD=89) and posts (Mean=507, SD=368) varied, however the Gini coefficient, an economic measure of statistical dispersion used to measure income distribution, remained surprisingly consistent (Mean=.29, SD=.02).
In this digital health program, it was not possible to detect usage patterns based on demographic characteristics. However, engagement in the social network strongly resembled a power law, and the Gini coefficient was consistent. These results suggest that it is possible to predict and stratify individual engagement patterns. Based on these findings, it may also be possible to develop algorithms that can intervene with specific users who are in the process of disengaging with treatment.
Live tissue staining as a new predicting clinical tool in organ transplantation
Methods to assess the status of a graft prior to transplantation are the Holy Grail of transplantation as they could predict graft outcomes and enhance patient experience. They are highly desirable for selection of suitable organs, avoidance of unnecessary surgical interventions and optimisation of clinical outcomes, as delayed graft function (DGF) may lead to lengthy follow-up treatments or even organ loss.
The use of expanded-criteria donor kidneys demands careful pre-implantation assessment. However, histopathological analysis of the pre-transplant biopsy is time consuming and therefore makes extended criteria organs even riskier. Our aim is to establish a rapid assessment tool of donor kidney quality and investigate its predictive value for the clinical use.
Based on the Biopsychronology study using rodent kidneys, done by Hermann/Ashraf et al., we started a prospective clinical trial at Innsbruck Medical University in October 2015 to implement live confocal real time analysis as a new predicting clinical tool in the clinical routine for deceased donor kidney transplantation. The stains used for confocal analysis are neither toxic, nor influencing the subsequent routine histological and immunohistological assessment. For this study, a semiquantitative score for quantification purposes of the imaging results has been created and is compared to/ correlated with the biopsy-histology result (using the Remuzzi score) and the clinical course of the recipients. The score displays the sum of viable cells divided by the number of dead cells per examined area (glomerulus, proximal and distal tubules; with an overall score of -3 (nonviable) up to +3 (100% viable). Statistical analyses are done with GraphPad Prism and SPSS.
So far, 12 kidney transplant recipients (four female (30.77%); two retransplantations (16.7%)) have been included in the trial and successfully transplanted. The median recipient age was 59.03 years; the median donor age was 61.04 years. Mean ± SD cold ischemia time was 16.45 ± 3.7 hours. The median score for the real time imaging results was +1 (-1 to +3). Two patients developed DGF (16.7%) with a score of 1 in both; there was no primary non function. The mean ± SD serum creatinine and serum urea at discharge were 1.78 ± 0.74mg/dl and 73.33 ± 29.27mg/dl. No organ has been discarded so far on basis of the imaging result.
After including the first patients in our clinical trial, we could see that the approach is feasible and safe and the real time imaging provided us detailed information about the organ quality. In addition, it is possible to image exact the same biopsy area at the same time point. Furthermore, our method can be used straight away- less than half an hour- after taking the biopsy with the advantage of explaining our patients what is going on in their organ.
A dual-glove mirror rehabilitation system using soft robotics and sensors
This paper presents a dual-glove rehabilitation system, comprising of a soft robotic glove and soft sensor glove, designed to provide individuals with robot-assisted hand mirror therapy and assist them in performing key hand functions during activities of daily living. The soft robotic glove is worn on the affected hand, while the soft sensor glove is worn on the unaffected hand. The soft sensor glove is equipped with soft flexible flexion sensors that read the individual joint motions and communicate with the soft robotic glove. The soft robotic glove utilizes soft pneumatic actuators that are low-profile, highly customizable and compliant. These actuators can provide assisted natural motion to the fingers and thumb during hand closure, and are able to generate sufficient force to assist in hand closing and grasping during different manipulation tasks. Any hand postures adopted on the soft sensor glove can be mapped directly to the soft robotic glove, thereby allowing the patient to personally control the movement of the affected hand, and perform hand mirror therapy exercises for rehabilitation and assisted hand functions for common daily tasks. Experiments were conducted to evaluate the performance of the soft sensor glove and the soft robotic glove, particularly the extent of kinematic sensing and assistance, and the force output. We will present preliminary results of a stroke patient performing robot-assisted hand mirror therapy and different manipulation tasks with the dual-glove system. We expect that this system will act as an adjunct to therapists and raise their productivity, given growing manpower constraints. The system will also potentially optimize the patients’ therapy time and allow convenient at-home rehabilitation and assistive functions, thereby improving level of recovery, independence and quality of life.
ResearchMatch: an online platform to connect volunteers and clinical researchers
Members of minority groups, women, rural populations, and the elderly are often underrepresented in clinical research due to a number of barriers. ResearchMatch (researchmatch.org) is a CTSA developed tool that aims to remove these barriers through partnerships with researchers and advocacy groups to increase patient engagement and access to information. ResearchMatch is a disease-neutral, institution-neutral, online volunteer recruitment and engagement platform, available at no cost that matches individuals interested in research participation with researchers looking for volunteers.
Volunteer functions include:
- Search Modal- search for conditions, obtain links to partnering organizations, educational sources, and view aggregate data on others with same conditions
- Volunteer Dashboard- provide feedback on experiences
- Network Page-search institutions and advocacy organizations
- Tell a friend
- Trial Finder- access to ClinicalTrials.gov via user friendly questions
Researcher functions include:
- Advanced searches- filter registry by geographic, demographic, twin, veteran, smoking status, and medication use and health conditions
- Rapid survey capability
- Random selection tool- reduce selection bias
- Hypothesis Generator- provides aggregate data on a specified sub-set
- Feasibility Search- search for a cohort, and save search for later recruitment
- Pre-screening surveys
- Condition Connections- predetermined question set designed to increase the precision and prescreening process for matching volunteers and research teams
Additional tools for volunteer engagement:
- Patient advocacy organizations- partnerships with disease advocacy organizations and community researchers expand a project’s reach to local and national stakeholders
- Social media engagement
- Return of results- links to published studies on site and social media with a synopsis of the article in lay language
- Bi-monthly newsletter- using Constant Contact
The system currently supports >90,000 volunteers, >3,500 researchers, and 117 institutions all working together to streamline the recruitment process and speed the process of discovery for translational research. Approximately 11% of the volunteers are African American, 4.4% are multi-racial and 7% are of Hispanic or Latino ethnicity. 99% of the volunteers have been contacted with a study opportunity; of those 60% say they are interested in learning more. To date ResearchMatch has proven an effective tool for study enrollment across a diverse field of populations and therapeutic areas.
ResearchMatch fulfills unmet needs of multiple stakeholders, namely underserved and minority populations. ResearchMatch can be leveraged to provide services beyond study recruitment. This will help multiple diverse populations obtain access to researchers and clinical trials with the overall goal of increased education, awareness and access to biomedical research initiatives.
Embracing diversity through precision, race-specific modeling of propofol-induced loss of consciousness
Background & Objectives
Propofol is routinely used worldwide and in the US on patients of different races. During propofol sedation, inadvertent general anesthesia due to overdosing or patient sensitivity can be life-threatening if untrained personnel cannot rescue the airway and re-establish oxygenation. Our aim is to reduce overdosing and potential associated complications during sedation of patients from races sensitive to propofol.
Material & Methods
We compared in 4 races the EC05 (Effective Concentration for 5% of a population), EC50 (median) and EC95 propofol concentration at the effect site compartment (ESC) at loss of consciousness (LOC), abbreviated as ESC ECXX @ LOC. Below, we use EC50 as an example of how we obtained ESC ECXX values where they were missing.
A literature search yielded varied administration protocols and results in different formats and drug compartments. We used the Marsh Diprifusor TCI model in Tivatrainer© (v8, build 5), a commercial program, to re-run protocols, where needed, to obtain data in a standard format: ESC ECXX @ LOC.
Milne et al1 administered propofol to 40 (19M, 21F) ASA I, II Caucasians via Target Controlled Infusion (TCI; Diprifusor, sw v2) that predicted ESC propofol concentrations. The ESC EC50 @ LOC (95% C.I.) was 2.8 (2.7-2.9) μg/ml.
Xu et al2 administered propofol via TCI (Diprifusor, sw v2) to 405 (97M, 308F) ASA I, II Chinese. The ESC EC50 @ LOC (95% C.I.) was 2.2 (2.2-2.3) μg/ml.
Natarajan et al3 (2011) used a non-TCI pump to administer a constant propofol infusion of 40 mg/kg/hr. The mean (±sd) dose of propofol at loss of verbal response was lower (p < 0.001) in Blacks (n=50) at 1.17 (0.25) mg/kg compared to Caucasians (n=50) at 1.41 (0.4) mg/kg. When simulating Natarajan’s protocol on Tivatrainer, the mean ESC propofol concentrations for loss of verbal response in Blacks and Caucasians were 0.85 and 1.18 μg/ml respectively. To derive a median EC50 ESC @ LOC for Blacks, we used the ratio of Black to Caucasian mean ESC @ LOC from Natarajan to arrive at a scaling factor: 0.85/1.18 = 0.72. We then multiply the ESC EC50 @ LOC for Caucasians from Milne et al (2.8) by that scaling factor (0.72) to obtain a derived ESC EC50 @ LOC for Blacks of (0.72 * 2.8) = 2.02 μg/ml.
Puri et al4 used a TCI pump displaying only blood concentration with 18 ASA I/II Indians. Blood EC50 (95% C.I.) at LOC was 2.31 (2.16–2.45) μg/ml. Repeating Puri’s protocol with Tivatrainer, at a blood concentration of 2.31 μg/ml, ESC EC50 was 1.88 μg/ml.
Figure. Propofol Effect Site Compartment EC05, EC50 and EC95 concentrations @ LOC predicted by the Marsh model for 4 races
Our data suggest reduced initial doses for Indians, Blacks and Chinese during propofol sedation, if using dosing guidelines or PK models based on Caucasian populations.
How long does it take to heal — a doctor?
As the United States wrestles with a chronic disease epidemic most experts would agree that lifestyle medicine is the most important solution. But most doctors are not effectively trained to address behavior change in their patients.
For twenty years, The University of Arizona Center for Integrative Medicine (AzCIM) has been developing innovative curriculum around lifestyle change. An early adopter of online learning, AzCIM currently trains 130 fellows per year and licenses its 200-hour online residency curriculum to 70 residencies around the world.
To determine whether training IM physicians leads to improved patient outcomes, AzCIM opened The University of Arizona Integrative Health Center (UAIHC) in 2012 to provide and measure outcomes of adult integrative primary care. UAIHC delivers a team-based approach that combines conventional primary care (by AzCIM fellowship trained physicians) with providers of nutrition, mind-body, chiropractic, acupuncture, and health coaching. To evaluate the integrative approach, a comprehensive evaluation design was implemented and includes longitudinal assessment of patient self-report wellbeing measures, clinical outcomes, patient and provider integrative practice fidelity measures, and cost effectiveness.
Preliminary results for self-report measures reveal statistically significant improvements in mental, physical, and overall health; work productivity and activity; and overall well-being (n=165). Statistically significant increases from baseline to 12-month follow-up were found on the Short-Form Health Survey (SF-12) general item scale and Physical and Mental Health scales (p = .002). A 12% improvement on the World Health Organization Well-Being Index (WHO-5) was also observed (, p < .001). Employed patients (n=101) reported a significant decrease in overall work impairment on the Work Productivity and Activity Impairment Questionnaire (p = .002). A significant decrease in overall activity impairment was reported among all patients (p = .02).
Preliminary fidelity results (n=83) indicate most patients felt practitioners understood their values/beliefs about health (91%), knew about their worries/stressors (87%), explained things clearly (99%), and carefully listened (94%). Patients reported that practitioners discussed specific interventions to improve health (96%), helped them to change habits (95%), felt practitioners attended to their emotional well-being (94%), spent enough time with them (92%), and cared about their health as much as they did (93%). On a 10-point scale, 93% of patients rated trust of their practitioner at 7-10. Ninety-seven percent would recommend UAIHC to others. Examination of practitioner fidelity, clinical outcome and cost effectiveness results are underway.
The AzCIM model of IM training is effective in teaching physicians to provide lifestyle medicine and improving outcomes of care.
Women, wellness and technology: 3 key insights from SSW inspire new opportunities for well-tech
By 2018, an incredible 3.6 billion people will have access to the internet, and many will gain access from mobile and wearable devices. According to Rock Health’s 2015 Digital Health Funding report, the health care consumer engagement and personal health tools and tracking categories were their fastest-growing categories in 2015, up 222% year-over-year, and accounted for 23% of overall funding. The opportunities this rapid category adoption poses for both consumers and brands are exciting to say the least.
In early 2014, however, we noticed that women lagged behind men as early adopters of wearable technology. While sales have since reached gender parity, the initial gap sparked a hypothesis: The wearable technologies currently on the market don’t yet meet the broad range of women’s needs when it comes to wellness.
As advocates and specialists in women’s health, the engagement strategy team at SSW led a multi-phased research project to understand not just how women use wellness technology, but also how they perceive wellness and set wellness goals for themselves. We connected with close to 200 women across a range of demographic and geographic backgrounds between August 2014 and May 2015.
Our research uncovered a dichotomy between what women ask of tech and its potential, driven by how women perceive wellness, the central role of social relationships in their wellbeing, and their emotional relationship with technology. These findings not only validate our hypothesis, but also more importantly indicate that women won’t be the ones asking for their needs to be met. It’s up to the industry to design what women can’t yet imagine and convince them of the positive impact new types of well-tech could have beyond simple tracking.
Conclusions from our key findings into 3 categories:
- Defining wellness and setting goals
- The integral role of social relationships
- The well-tech dichotomy
For the first time, we’ll present the full findings and insights from the study as well as share any new learnings in October 2016.
OneRing: automated parkinson’s disease stage classification through random forest learning ensembles – an intelligent wearable ring for monitoring motor symptom progression
This interdisciplinary study develops a wearable ring to automatically classify the stage and severity of Parkinson’s disease through novel machine-learning based signal-processing. The algorithms presented in this study are trained to analyze passively collected movement data; automatically generating a quantified patient report that is critical to tracking disease progression, and optimizing its treatment. Current diagnostic procedures of Parkinson’s – which affects millions worldwide – lack quantification, hence inhibiting a physician’s ability to accurately prescribe medication. The developed ring utilizes power spectral analysis and deviation calculations as feature generation mechanisms to extract the principle components from movement data collected over an entire day. Random Forest (RF) classification then algorithmically identifies unique Parkinson’s motor symptoms and uses the machine-learning ensemble to classify disease severity with 71% accuracy. The RF module, using stochastically trained decision-trees built from a labeled dataset of 30,000 examples, models movement patterns including Bradykinesia, Dyskinesia, and tremor to produce meaningful patient reports. Each report includes thousands of automated classifications resembling Hoehn and Yahr grading – therefore completely revolutionizing how physicians interact with their patients to prescribe medications. Overall, OneRing provides an entirely novel tool for monitoring Parkinson’s, therefore potentially facilitating faster relief from motor symptoms for thousands of patients worldwide.
Mobile mental health: understanding barriers & creating solutions
Steven Chan, John Torous, Alison Darcy, Adam Miner
Research has shown that mobile and wearable devices can improve the delivery of mental health care, particularly in the developing world where few psychotherapists and psychiatrists are available. Physiological, psychological, and behavioral metrics and real-time capturing of data can help detect mood disorders, relapses of addictions, relapses of psychotic disorders, as well as aid in greater understanding and awareness of one’s life patterns. Processing this data on a population level can help manage at-risk patients.
Meanwhile, more startups and entrenched players within the technology industry are recognizing unmet needs in this space. In 2015, over 70 new start-ups listed on AngelList focused on mental health. However, barriers such as patient privacy, government policy, clinician adoption, and patient adoption make implementation of such technologies difficult.
Our expert panel of patient advocates and clinicians will address the growing concerns about the privacy, legal issues, and efficacy surrounding the use of mobile devices in mental health care. Ultimately, digital mental health needs three approaches to succeed: a patient-centric approach is needed surrounding the use of patient-generated data; an evidence-based approach with reliable clinical studies; and clinical-based approach in which technologies work with clinicians, not around them.
Alison Darcy, PhD, is a Stanford University School of Medicine instructor, psychologist and health care designer with over 14 years experience in health tech. Her projects include a NIMH-funded study to optimize a smartphone app for eating disorders. Pioneered the use of Massive Open Online Course (MOOC) platforms for clinical training and treatment for anorexia nervosa.
John Torous, MD, is Clinical Informatics Fellow at Harvard Medical School, treating patients at Brigham and Womens’ Hospital and Beth Israel Deaconess Medical Center. John serves as Editor-in-Chief of JMIR Mental Health. He conducts clinical studies of smartphone apps, and analyzes companies as Innovation Specialist for Behavioral Health at Brigham and Women’s Hospital – Innovation Hub (iHub).
Steven Chan, MD MBA, at University of California, Davis, serves as American Psychiatric Association & SAMHSA MFP Fellow to the APA Council of Communications, the Committee on Mental Health Information Technology, and Workgroup on Mental Health & Psychiatric Apps. Steve’s ideas, thoughts, and research have been featured in JAMA, Healthcare, JMIR, Wired, PBS, and NPR Ideastream.
This isn’t your grandparent’s computer: Improving the health of older adults through innovative technology
Michelle Litchman, PhD, FNP-BC, Perry Gee, PhD, RN, Frances Patmon, PhD, RN, Chris Snider
The population is aging and technology use is becoming more commonplace among older adults. While medications are being reduced to avoid polypharmacy, the use of technology is on the rise to improve patient-provider relationships, support self-care, enhance health literacy, increase safety, and engage patients in their own health. This panel will highlight innovative concepts, creative design, and evolving technologies that should be maximized to optimize health in older adults with chronic conditions.
Frances Patmon, nurse and research scientist from Dignity Health focuses on older adult repeat utilization of services in the emergency department from complications of their chronic conditions. She will moderate the panel, framing the discussion about interactive patient engagement technologies (iPET) and how technology has the potential to improve the overall health of the aging population.
Michelle Litchman, nurse practitioner and assistant professor at the University of Utah College of Nursing, examines the intersection of diabetes, aging, peer health and technology. She will discuss the training and functional use challenges seen in older adults using technology to manage their health, and educational strategies for successful use. She will also provide insight on the safety issues related to not providing older adults with necessary technology, and training necessary for functional use, to manage their health.
Chris Snider, Stanford Medicine X Executive Board Member, social media strategist for Smart Patients and Patient Community Advocate for Symplur lives well with type 1 diabetes. He will discuss aging in the context of the diabetes online community through the platform of a #DSMA tweetchat. He will review how individuals engaging in the DOC define successful aging, their concerns about aging, how health care providers and technology can help or hinder successful aging, and how the DOC will support them as they age.
Perry Gee, nurse, clinical informaticist and research scientist from Dignity Health, studies chronic disease, eHealth, aging, and technology. He will discuss the role of design and human factors when developing technology for older adults to support, providing examples of successful and less successful technologies used in the clinical setting.
Patient-centric social media for outcomes and pharmacovigilance considerations: The time has come.
Brian Loew, Greg Powell
Patients and caregivers use social media to share health and medication experiences, as well as to seek advice and support. health care providers are increasingly turning to social media (Doximity, Sermo), to gain insights from their colleagues about how to best care for patients. Other interested parties, pharmaceutical and research companies working to deliver better and safer tools to the health care team, are regularly searching to better understand from patients and providers how to make a meaningful difference while keeping safe and effective products on the market.
Through the use of de-identified Big Data from online patient forums open to health care providers, the pharmaceutical industry may glean useful insights into both the safety of existing products as well as future needs of patients. Post-marketing safety surveillance for pharmaceuticals currently relies on data from adverse event reports to companies or regulatory authorities, medical literature, and observational databases. Together these sources provide some insight into everyday product safety or risk, but the unique insight the patients themselves can offer is also highly desirable.
Using insights from a 2016 research project involving Inspire, GlaxoSmithKline (GSK) Pharmaceuticals, and Epidemico, an innovative informatics company, we are exploring the use of social listening data for pharmacovigilance and other R&D concerns. A core question is, “What valuable insights can we glean from social listening to help improve patients’ lives—whether through improved safety, more relevant clinical trials, or research and development of new treatment options?”
Through social listening, publicly available social media data can be analyzed for a variety of insights into patients’ perspectives, including study endpoints of concern to patients, greater understanding of patients’ unmet needs in a therapeutic area, and areas of misinformation or lack of information about appropriate product use.
The integration of mainstream social media data (such as Twitter) and other data sources with deep and rich patient voice, and sentiment data, creates a unique addition/enhancement to the “everyone included” approach to health care. With over 800,000 members across 3,000 health conditions, Inspire has one of the largest patient cohorts, which has generated over a billion count of multi-dimensional unstructured data.
Presenting the combined experience as well as research findings will help conference attendees understand how health care social media can be harnessed to the good of many stakeholders. This collaboration is a step forward in the “everyone included” approach. Our goal is for patients to better understand how they can participate in the discussion through social media and help shape the future of their care. We hope for health care providers and other interested parties to gain insights in to how this technology can be used to improve their care of patients.
How patient engagement and gamification correlate with hypertension control
Ryan Wynia, Geri Baumblatt, Maulik Majmudar, Khan Siddiqui
Ambulatory blood pressure (ABP) is known to provide prognostic information about cardiovascular disease better than office BP. In-pharmacy automated ABP kiosks have also been shown to have similar accuracy as manual BP measurements done by health care providers. ABP kiosks in retail locations provide an accessible, affordable, convenient and accurate means for patients who cannot afford home BP devices to monitor their BP. Other studies have shown mixed results regarding effect of self monitoring of BP and long term BP control. Not much is known about the correlation of ABP control and self monitoring of BP with patient engagement and gamification.
To examine the relationship between ABP and patient engagement with a nationwide ABP kiosk platform.
De-identified historic data from a nation wide ABP kiosk network (www.higi.com) was analyzed from September 2012 to April 2015. Approximately 9,700 ABP kiosks were deployed within the network during the time period of the study. Approximately 1,928,900 patients created accounts on the engagement platform. Only patients with initial BP measurement in the hypertensive range and those who opted-in to share data for research purposes were included in the study. A total of 158,800 patients met all inclusion criteria for the study. Mean age of the study population was 49 years, with 58% male and 42% female. Almost half the patients were obese (49%). Level of engagement was defined as the number of average monthly logins on the gamificati on platform (i.e. kiosk, web portal, and mobile app). BP changes were defined as the difference between a patient’s first and last reading on the kiosk network. Patient demographics, level of engagement with the gamification platform and their ABP trends were analyzed.
Due to lack of control group in this study, the statistical significance observed in this study may not represent causation. We may have measured results of self-motivated patients who on their own or with the help of their provider have achieved better control of the BP. Throughout the course of the study new kiosks were being deployed resulting in some locations where there was not enough time available to measure outcomes for that population; this may have resulted in underestimation of the results. Further studies are needed with control groups to measure the direct effect of gamification on hypertension control.
The results show a statistically significant relationship between frequency of engagement as measured by level of monthly logins on the gamification platform and lowering of systolic BP.
Remote assessment of stroke severity with head-mounted computer
Telemedicine (TM) is a valuable resource when vascular neurologists are not locally available. Yet, the high infrastructure and startup costs and lack of portability associated with traditional TM devices may limit its use. Head-mounted computers (HMC), equipped with front-facing cameras, offer potential advantages to traditional TM, including a first-person perspective, hands-free portability, and lower equipment costs. However, feasibility of HMC’s in stroke assessment has not been assessed.
Eight patients with clinical diagnosis of stroke were assessed using the National Institutes of Health Stroke Scale (NIHSS). Each examination was performed by an investigator at the bedside while wearing the Vuzix M100 Smartglasses, an Android-based HMC with front-facing camera and monocular display. Through a wireless tablet, a remote examiner can view and communicate with the bedside examiner through the HMC via a HIPAA-compliant software platform created by Third Eye Health. Interrater agreement was assessed using Kappa statistics for each item on the NIHSS. Excellent agreement was defined as Kappa >0.75, moderate as 0.4-0.75, and poor as
Average NIHSS score (Table 1) was similar between bedside (7.63, range 0-26) and remote examiners (7.88, range 0-28). Breakdown and degree of agreement for each NIHSS item is shown in Table 2. The questions, visual fields, facial droop, left arm, right leg, and aphasia items showed excellent agreement. Moderate agreement was seen in the level of consciousness, gaze, right arm, left leg, ataxia, and dysarthria. Poor agreement was seen in commands, sensory, and neglect. Intraclass correlation coefficient for total NIHSS was high between bedside and remote examiner (0.9961; 95% CI 0.9826-0.9992), indicating high level of agreement.
These initial results suggest that a HMC is a feasible method to assess stroke severity, and may be a cheaper, more portable, hands-free alternative to traditional TM. Our study is limited by small sample size; enrollment is ongoing.
A sensor-based, objective measure of upper limb rigidity in Parkinson’s disease based on the pendulum test
Rigidity is one of the cardinal symptoms of Parkinson’s disease (PD) along with other motor symptoms such as tremor and bradykinesia. While these symptoms can be easily quantified with modern position sensors, assessment of rigidity, which requires determination of resistance to passive motion, remains elusive without external hardware capable of producing motion, such as specialized robotic devices. Currently, rigidity is assessed by the Unified Parkinson’s Disease Rating Scale (UPDRS) where stiffness of a manipulated joint is ranked on a subjective clinical scale of 0-4, and it is susceptible to inter-rater variability. The aim of this study was to utilize modified pendulum test to quantify rigidity in the arm by using lightweight motion sensors, and decreased arm swing as the clinical observation of the earliest manifestations of PD due to increased rigidity around the shoulder girdle.
The movement of arm swing of nine PD subjects (ON and OFF L-dopa medication) and controls was assessed. Similar to the “pendulum test” to assess spasticity in the lower limb, the upper limb was raised to a horizontal position against gravity and subsequently released. One accelerometer was attached to the wrist and one to the shoulder girdle in order to obtain linear acceleration and angular velocity recordings. Surface electromyography recordings of the anterior deltoid and triceps monitored the myoelectrical features of rigidity. UPDRS was utilized to assess clinical rigidity in both arms of PD subjects. The analysis was greatly extended by using quantitative accelerometers and the physical properties of a subject’s arm to fit dynamic models during the whole period of the swing. Second-order, linear time-invariant (LTI) models were built and model parameters including decay rate and damping ratio were compared.
The damping ratio, which significantly correlated with clinical rigidity scores off medication, was greater in PD subjects (both ON and OFF medication) compared to controls (p < 0.0035); also, it was significantly decreased after PD subjects took L-dopa medication. The averaged effective decay rate was significant across groups: the highest decay rate was seen in PD OFF subjects, followed by PD ON subjects and controls (ANOVA, p < 0.0158). Clinical rigidity scores in both arms were significantly correlated with mean effective decay rate in PD OFF subjects (p = 0.0012).
The modified pendulum test is an objective quantification of rigidity that is simple, i.e. not requiring large external biomechanical devices, and accurate, as it assesses the whole duration of swing as opposed to first swing excursion. We have shown that motion in the arm in response to gravitational force can result in estimates for rigidity that correlate closely with clinical assessments by clinicians. The distinctive differences in arm swing between PD patients and controls may be helpful for early diagnosis, and for follow up of the pharmacological, physical therapy and surgical treatments. Thus, the framework presented may provide a critical role in the comprehensive automatic assessment of PD.
The development of novel chemotherapeutic agents for Tuberculosis and HIV co-infection
Human immunodeficiency virus (HIV) has changed the global profile of Mycobacterium tuberculosis (Mtb), the causative agent of tuberculosis (TB). TB is the leading cause of death in AIDS patients worldwide. The apparent lethal synergy of TB with HIV has made the requirement for the development of new anti-TB and anti-HIV agents more imperative. Presently, the therapeutic management of HIV patients co-infected with Mtb poses great challenges because of drug-drug interactions and toxicity. Moreover, the emergence of multidrug resistant TB (MDR-TB) in HIV patients threatens to put an end to the efficacy of these drugs. Therapy for MDR-TB takes several years to complete, comprises of toxic second line drugs, and has high failure rates. Therefore, novel ways to treat HIV patients co-infected with TB are needed. Our research efforts have been focused on the development of new therapeutic agents for treatment of both TB and HIV infection. Our hypothesis is that therapeutically targeting N-terminal processing of essential TB and HIV proteins will treat and/or limit the progression and dissemination of these pathogens in co-infected patients. Methods: We used an unconventional approach to simultaneously inhibit TB and HIV. While at the Johns Hopkins University School of Medicine, Dr. Omonike Olaleye used a spectrophotometric assay to screen a library of 175,000 structurally diverse small molecules and identified novel potent inhibitors of M. tuberculosis. Following this analysis, we determined the potency of these inhibitors on HIV infectivity in collaboration with colleagues at Baylor College of Medicine. Furthermore, in collobaration with colleagues at University of Texas, Medical Branch in Galveston, we developed a novel assay for the high-throughput screening (HTS) of inhibitors that have both anti-HIV and anti-TB activity through ELISA, bacterial enumeration, and multi-variate flow cytometry. Results: We identified, characterized and developed potent novel compounds that have dual anti-TB and anti-HIV activity with safe pharmacologic profiles. Our preliminary pharmacokinetic and cytotoxicity studies have shown promising results for the newly discovered compounds. Our results with the novel HTS assay has demonstrated the utility of this model to rapidly evaluate drug effectiveness relevant to cellular toxicity, HIV-1 replication, and intracellular mycobacterial growth. Conclusion: The clinical significance of this study is that: The therapeutic targeting of TB-HIV activity in co-infected patients, would accelerate the future development of new agents to treat drug-resistant TB and HIV infections in the clinic. Moreover, the development of a HTS assay has great value in accelerating the discovery of new compounds for use in TB/HIV co-infected patients. Our results provide critical data on the interactions of HIV and TB with direct implications on efforts to control the global HIV and TB pandemics.
Engaging with parents to develop innovative e-tools that merge research and story
With more than 2.3 million visits annually in Canada, the emergency department (ED) care of children results in considerable financial, emotional, and resource implications for families, health systems and society. Many visits are for minor conditions that could be more aptly treated in other settings or at home (e.g., sore throats, ear infections); moreover, 1 in 5 non-admitted ED visits could be avoided. Knowledge translation (KT) initiatives that target parents and emphasize their role as a partner in health, can inform their decision-making, shape treatment expectations, and influence health care utilization. We have built a successful model of developing, evaluating, and disseminating effective KT tools (eBooks, whiteboards) based on the best available synthesized research evidence and the power of the arts and story to increase parent confidence and knowledge on the most prevalent conditions for which children seek care in Canada.
To demonstrate: 1) our model of engaging parents in developing, evaluating and disseminating KT e-tools, 2) our KT e-tools, and 3) results from the usability testing.
Using our national parental needs assessment results (n=1097) we have selected priority health conditions. Using qualitative methods, we interview parents about their experiences having a child with the conditions under study. Concomitantly we conduct systematic reviews of the best available research for management of the conditions. Working with creative writers and graphic designers, we develop composite narratives and then integrate synthesized research evidence to develop e-books and whiteboard videos. Once we have a prototype, we conduct iterative feedback and refinement cycles with pediatric emergency health care professionals and parents. Refinements are made to the tools and then we conduct usability testing of each tool in ED waiting rooms. Usability testing assesses 10 aspects on a 5-point Likert scale (e.g., aesthetics, functionality, understandability). Once usability testing is completed, additional refinements are conducted and the e-tools are embedded in national platforms for pediatric health care (www.trekk.ca; www.echo.ualberta.ca; www.arche.ca). Targeted social media is completed to further enhance dissemination and uptake. Google analytics is regularly assessed and the research evidence underpinning each tool is re-examined every 4 months.
To date, we have developed 5 KT tools for parents focused on croup, gastroenteritis, and chronic pain and we are currently developing 4 tools for pediatric procedural pain and otitis media with 6 more tools in product planning. Our focus on developing KT for parents is novel and complements other initiatives that target health care providers. The model we have developed is transferable to clinical areas beyond the pediatric ED, is scalable to international contexts, and simultaneously leverages significant economies-of-scale.
3D printing in pre-operative planning of pelvic fractures
Gen Lin Foo
Complex fractures such as pelvic fractures require a great deal of planning pre-operatively in order to maximise the success of surgery, as adequate reduction and stable fixation are vital. Current methods of pre-operative planning include the use of CT 3D reconstruction models and virtual environments e.g. TraumaCAD (BrainLab). We theorise that the use of actual dimension synthetic models of fractures printed out by 3D printers can better assist in surgical planning, implant selection and even allow pre-operative plate contouring. This should translate into improved surgical efficiency and precision, reducing surgical time, blood loss and morbidity.
Materials and Methods
CT scan data of a patient with a pelvic fracture was processed using Materialise Interactive Medical Image Control System (MIMICS) software to obtain stereolithographic (STL) files of individual fragments of the fracture.
The model was produced using two different printers and materials: Fabbox 3D Printer (Fused Deposition Modelling –ABS plastic) and Objet30 Scholar Professional 3D Printer (Polyjet 3D printing technology –UV curable resin).
The fragments were printed out separately and then reduced temporarily with modeling clay.
Synthes 3.5mm Low Profile Pelvic System hole recon plates were contoured using the model and actual fixation was performed with screws.
This pilot study confirms the feasibility of production of actual dimension models of a pelvic fracture and its durability in allowing fixation with plates and screws. Potential downsides of this system that we encountered were:
- The time taken to process the CT data to produce print-worthy STL data
- Loss of accuracy during data processing (due to ‘smoothening’ of fracture surfaces and also removal of small fragments deemed insignificant and not contributory to fixation)
- The printing time (Fabbox 3D Printer: 34 hours 44 minutes, Objet30 Scholar Professional 3D Printer: 30 hours)
- High printing costs of the resin model
We also foresee the following obstacles translating this system into clinical practice:
- Need for dynamic and efficient teamwork between surgeons and technicians (data processing, model printing) to obtain the models in time to plan surgery
- Availability of technicians and 3D printers
- Extra costs involved in the 3D software licensing, model printing and employment of technician services
The fracture model serves as a useful adjunct in understanding the fracture configuration and pre-operative planning. Having the actual model to work with simplifies the selection and placement of implants as well as estimation of screw lengths and trajectory. It also enables pre-operative contouring of implants. However, the use of 3D printing technology in this field is still in its early days and advancement in the ease of data processing and speed of printing is required to promote its relevance and efficacy.