The following was written by Medicine X Student Advisor Nicholas Vu. Nicholas is a pharmacy student at the University of California at San Diego.
Glowsticks, MisFit Shines, a wellness room with a refrigerator for medications, and Zoë Chu, the dog – these were all aspects of Stanford Medicine X, as envisioned by the creative mind of conference founder and executive director Larry Chu, M.D. As I listened to the myriad of ePatient experiences ranging from prosthetic legs to rheumatoid arthritis, I realized how unique Stanford Medicine X is in comparison to all of its digital health conference peers.
Last year, there were over 27 conferences that focused on digital health. Already, mobile technologies were beginning to transform patient care, and Big Data was no exception, with rapidly increased levels of understanding. Lloyd Minor,M.D., Dean of the Stanford School of Medicine, urged this conference’s attendees to view their time here as the beginning of many encounters to come. Amir Dan Rubin talked about how our health care is moving into the cloud and what Stanford is doing to deliver care into the Stanford health cloud. He went on to talk about how to create “leading edge” care vs. “coordinated care.” Stanford Medicine X 2014 integrated ePatient success stories along with cutting-edge technologies, with the aim of developing sound social media solutions, business tactics, and research practices.
Daniel Siegel, M.D. (University of California, Los Angeles) started Medicine X with a keynote about how wellness is dependent on integration. In Dr. Siegel’s view, “Interpersonal integration catalyzes neural integration. That’s why a thirty-second empathic comment improves the immune system.” Moreover, relationships can be defined as the sharing of energy and information. He continued his talk with points on how aspects of the social world affect the molecular components of the human body. For example, having a present mind can improve telomerase levels.
Kyra Bobinet, M.D. (EngagedIn) hit the stage to discuss the difficulties of self-tracking. She claimed that the only patients that knew how to use self-tracking devices were the ePatients at this conference. As a result, she called for the need to educate patients on how to use these devices. Jon Schull (E-nable) showed us low-cost, 3D-printed prosthetic hands for disabled children. The awe-inspired crowd thoroughly enjoyed his heartfelt passion, and his desire to aid the pediatric community in experiencing things like a handshake. Dana Lewis (Providence Health and Service) led the next panel on “The No-Smartphone Patient.” Veenu Aulakh (Center for Care Innovations) talked about how her health care organization served approximately 7.6 million Californians regardless of their ability to pay. She also brought to our attention that only 8% of low-income elderly patients had smartphones. Also, 1 out of every 3 Americans had low health literacy. She closed with a call for leveraging texting, video, and telehealth solutions to make a difference in the world today. Moreover, she said that to engage non-tech users to use technology, we had to use our health centers in our local communities. Josh Nesbit (Medic Mobile) geared the conversation toward his company’s research studying the effect of mobile interventions on vaccination rates in Namitete, Malawi, Africa. The vaccination rate in Malawi was 67% before Medic Mobile interventions. It increased to 97% after Medic Mobile interventions.
On Day 3, Reena Pande, M.D. (AbilTo, Brigham and Women’s Hospital) started a breakout session on the emerging technologies in mental health. She explained how it was easier for her practice to bill for psychotherapy than for cardiac visits. Mark Goldenson (Breakthrough) talked about how online counseling could be as effective as in-person care. He also said it could be six times more expensive to see a therapist in person than online. Some of Breakthrough’s patients in Nebraska were 200 miles away from their nearest therapist. Mr. Goldenson closed on the note that telemedicine is attractive due to convenience. Alejandro Foung (ThriveOn) said his company provides “coaching,” not “therapy” for mental health patients. He said the average cost of a mental health practice is $200 per hour. ThriveOn provides coaching with a licensed professional for $50-$125 per month.
Quantified Self Movement
Gary Wolfe (Quantified Self) took the stage to update the community on the current state of the Quantified Self Movement. He started with a comment on how personal scientists were more likely to find useful discoveries than professional scientists. As he talked about the ethical issues of who owns a patient’s data, he expounded on the fact that there were ethical issues with regard to whether patients should even use their own data to make meaningful clinical conclusions.
Britt Johnson (HurtBlogger) continued the discussion with a point on the ineffectiveness of quantifying pain. She explained that quantifying pain with big data was difficult because the reminders in and of themselves changed her perception of her pain. Sara Riggare (Karolinska Institute, Sweden) talked about how she did not need self-tracking devices for her Parkinson’s Disease tremors. Her rationale was that if she was doing well, she just wanted to get on with life.
Medicine X ePatient scholar Carly Medosch talked about her experience living with Crohn’s Disease and fibromyalgia. She claimed that she had yet to find a doctor who was interested in using her pain data. She also called for devices that could monitor different laboratory values (e.g. inflammation levels and vitamin B12 levels).
Research in Social Media
Thomas Lee (Symplur) started the talk about social media with a comment on how the number of people in the full social media audience was many times the number of people in Plenary Hall. Audun Utengen (Symplur) emphasized the importance of getting the right tweet to the right patient at the right time. Shiyi Zan (Partners Healthcare Center for Connected Health) talked about her work on leveraging social media for adolescent and young adult healthcare. She used a PRISMA Flow Diagram to show her results. Ms. Zan drew three conclusions from her studies: 1) the use of social media facilitated patient-provider communication by offering healthcare providers a way to engage with adolescents where they resided; 2) by understanding how adolescents engage with and consume information on social media platforms, we could improve upon current patient engagement strategies; and 3) social media was becoming increasingly real-time, immediate and local with the advent of mobile technology. Sean Young, Ph.D., M.S. (UCLA) talked about how social networking technologies could be used as a tool for HIV prevention. Dr. Young extracted psychological/behavioral information from tweets, identified the location of these behavioral tweets, and categorized HIV risk-related tweets associated with HIV. Like other social media researchers at Medicine X, his study only identified patients talking about their respective disease states. No clinical conclusions as a means to help these patients manage their disease states were made. Ken Yale, D.D.S., J.D. (Active Health Management) talked about the efficacy of “carrots” vs. “sticks” to improve patient engagement. 27% of employers used a cash-based incentive to engage their employees, whereas 37% of employers used a negative incentive. Dr. Yale’s study found 3 things: 1) incentives improved health assessment/biometric screening completion; 2) health assessment completion appears to be associated with ID rates for disease management; and 3) offering between 6 and 11 incentive choices drove the highest levels of engagement. Jordan Shlain, M.D. (HealthLoop, CA, U.S.A) talked about the difference between digital health and healthcare. Digital health is binary—composed of 1’s and 0’s. Health care was trinary—composed of 1’s, 0’s, and u’s. The “u” stands for “YOU,” meaning the “patient.” His patient-physician engagement startup, HealthLoop, recently received $10 million in Series A funding, which demonstrated that there was value in the research of community continuity coefficients.
ePatient Ignite! Talks
The New Team panel was the first ePatient panel in Plenary Hall. Erin Moore (66 Roses; Cincinnati Children’s Hospital Medical Center) opened her Ignite! talk with a statistic on her son losing 10% of his lungs every year to cystic fibrosis. She continued with a statement on how her search for life-saving treatment should not be dependent on randomly stumbling upon the right tweet or Facebook post. Vivian Lee, M.D. (University of Utah Health Services) continued the discussion with two important formulas: 1) (Data + Transparency + Patient)/Provider engagement = Healthcare Transformation and 2) Value = (Quality + Service)/Cost. She also mentioned how more research needs to be done in the home component of healthcare. As an administrator, she was not currently responsible for home health and there needed to be financial incentives for said responsibilities. Dr. Lee closed her stage talk with a call for the medical school curriculum to incorporate lessons on how to engage patients.
Ann Lindsay (Stanford Coordinated Care) started her talk with a blurb about how Stanford Hospital was paid via capitation. She also showed a chart on the major determinants of health and their contribution to premature death: medical care accounts for 10%, and behavior accounts for 40%. To demonstrate the value of Stanford Coordinated Care (SCC), she told us a story about a patient with Systemic Lupus Erythematosus. Before enrolling in SCC, the patient was on peritoneal dialysis and renal dialysis, had calluses, and took an immunosuppressant drug. After enrolling in SCC, his calluses were healed. After being discharged from the hospital, the patient was given an action plan so he and his family could afford the $7,000 hospital bill. Ann was not sure if SCC was actually lowering costs, but the SCC Team was having fun creating personal relationships, and the patients loved the SCC Team. Doug Kanter (Diabetes ePatient Scholar, U.S.A.) stressed the importance of doctors and patients having an equal partnership in the discussion of the patient’s health.
On Day 2 of Medicine X, the ePatient Ignite! talks started off with Emily Bradley (Chronic Curve). She suffered from a complicated form of rheumatoid arthritis. She focused her talk on the importance of closing the patient-provider communication gap. Moreover, she talked about how social media may be used to close said gap. Matthew Dudley, D.O. (Alaska Hospitalist Group) talked about his recent diagnosis with Acute Myeloid Leukemia and how it affected his life as a family medicine physician. Similar to Ms. Bradley, he encouraged those with AML to find others with similar struggles. With the encouragement of the community, the pain he felt subsided.
Marie Ennis O’Connor (Health Works Collective, Ireland), breast cancer ePatient scholar, continued the discussion with a point on big data – “One person’s TMI (too much information) was another person’s NTK (need to know).” She pointed out the importance of ePatients speaking aloud their medical problems. Utilizing Robin Williams as a relatable example, she encouraged everyone to speak the truth about their disease states, and move away from silence and shame.
Joe Riffe (Prosthetic Medic), ePatient scholar, talked about his struggles living with a prosthetic lower left leg. Plenary Hall adored hearing about his experience with getting insurance companies to pay for his prosthetic leg. His social media followers bombarded the insurance company via Facebook, Twitter, e-mails, and phone calls. The chief medical officer of his insurance company called Mr. Riffe in response, saying that the company would pay for his leg if his followers would stop contacting the company.
Nisha Pradhan, also an ePatient scholar, talked about her experience with anosmia (the inability to smell), and closed the day’s ePatient talks with a call for providers to look for a patient’s pain.
Student Scholar Speeches
Rachel Novak, Pharm.D. (Oregon Health Sciences University) gave Plenary Hall a crash course on pharmacogenetics. 188 drugs have genetic specific information. More than 75% of the population had genetic variations. Dr. Novak claimed that the main challenge to implementing personalized medicine was to get insurance companies to cover the costs of genetic tests.
Howard Chiou, M.D., Ph.D. candidate (Emory University) gave the second student scholar talk on the presence of different tribes in a hospital. He made four important points: 1) Hospital tribes are unequal, 2) Hospital tribes do not have the same values, 3) Tribal members do not always understand one another, and 4) Tribal priorities are contested. He closed his talk with two related claims: 1) All change in healthcare were social and 2) We all needed to be anthropologists.
Charles Ornstein (ProPublica) gave a keynote on the need for data on all payments from drug/device companies to doctors to be publicly accessible. This would equip patients with information, and enable them to better assess whether their physicians might be prescribing in a biased manner. A panel led by Paul Costello (Stanford School of Medicine) followed Charles Ornstein’s keynote. Mr. Ornstein made a comment about looking for the Oxycontin prescribing behavior of physicians to determine if a patient should have seen that physician. Moreover, he shared that 11 out of the top 20 Oxycontin prescribers had been indicted or convicted. Conversely, Howard Look (Tidepool, CA, U.S.A.) believed there was too much emphasis on provider data and not enough on patient data. Fred Trotter (DocGraph Journal) stated that the real danger lay in not giving patients access to the data they needed to effectively manage their disease. Vivian Lee, M.D. agreed but also gave weight to the fact that most organizations were not open to providing patients said data.
Breakout sessions comprised a significant portion of this year’s Medicine X conference. In one room, Christopher Campbell (Redspin) gave a presentation on information security and risk management for ePatients. He brought awareness to the fact that Facebook would be able to mine your personal health information in the future. Apple has partnered with Epic Systems and Mayo Clinic as a part of a project called HealthKit. Google has partnered with Novartis to develop smart contact lenses that measure blood sugar levels. Kelly Grindrod, Pharm.D. (University of Waterloo, Canada) gave a presentation on the use of medication management apps in elderly patients. The five main lessons she learned from teaching elderly patients to use technology were: 1) Don’t worry, you won’t break the iPad/technology you’re using; 2) Just play with it; 3) Instruction manuals are not out of style; 4) Visible + audible = usable; and 5) Know your user. Camille Williams (Midtown Sinus Clinic) talked about how most tasks in a clinic could be systematically programmed and automated to reduce overhead costs. She also asserted that the real customers were the insurance company, not the patients. Joe Smith, M.D. (West Health) talked about the importance of interoperability efficiency—90% of hospitals used six or more types of devices that could be integrated with electronic health records. Moreover, fewer than three of those types of devices on average were integrated in hospitals investing in interoperability.
Joyce Lee, M.D., M.P.H. (Doctor As Designer) started off a second series of breakout sessions with her work on quantifying diabetes related discussions on Twitter. Drawing from global Twitterfeed heat maps and diabetes-related hashtags, Dr. Lee came up with one conclusion: “The biggest risk of social media in health care is not using it at all.” With hashtags like #diabetes, #dsma, #doc, #bgnow, #t1d, #type1diabetes, #type2, #type1, #type2diabetes, and #bloodsugar, she analyzed 623,481 Tweets. Diabetes heat maps of the globe showed most diabetes-related tweets were coming from the Pacific Islands and the United States of America.
After I left Dr. Lee’s talk, I rushed over to Felix Jackson, M.D.’s workshop on how pharmaceutical companies are adopting social media. Much of Dr. Jackson’s workshop focused on why Janssen Labs shut down a major psoriasis website (www.psoriasis360.com). This website contained many patient-generated comments on psoriasis treatments. It was shut down because many of the comments that patients made were unhelpful in recruiting patients to new clinical trials.
Warren Wiechmann, M.D., M.B.A. (University of California, Irvine) talked about his research utilizing the iPad in an educational setting. While in the patient counseling room, 70% of medical students did not turn off the iPad screen to limit distractions. 17% of these students believed the iPad was a distraction in the counseling room. One major fear Dr. Wieichmann had about iPad use was that the student-clinician’s back might be turned to the patient. His solution was to put the iPad in between the patient and the student-clinician. He focused on engaging the patient to use the iPad with the student-doctor during the consultation. Kirsten Ostherr, Ph.D. (Rice University) introduced themes that echoed and expanded on the ideas in Dr. Wiechmann’s presentation. She explained that there was a historical precedent for medical schools being slow to adopt digital health technologies. When digital health technologies were sold under the umbrella of participatory medicine, however, they became more attractive.
The next breakout session was on “Bridging the gap between providers and patients.” Marc Katz, M.D. (Bon Secours Richmond Health System) spoke about his experiences as a cardiac surgeon. He loved it when his patients came with questions about their data. Roheet Kakaday, M.D. candidate (Oregon Health Sciences University) made a point about not interrupting the patient and just letting them say what they needed to say. Nikki Estanol (California State University, Long Beach) urged all physicians to focus on the “small” things in the consultation room, e.g., making eye contact with the patients.
Online Physician Identity
Bryan Vartabedian, M.D. (33charts; Baylor College of Medicine) and Wendy Sue Swanson, M.D. (Seattle Children’s Hospital) led a class on The Physician Online Identity. They claimed that there are two components of Twitter: content and conversations. There are four things that we can do on Twitter: create, curate, converse, and consume. Dr. Swanson pointed out that in order to be a creator of content on Twitter, one must occasionally remove oneself from Twitter to reflect. She also differentiated aggregation from curation. Aggregation involved an algorithm that pulled multiple components together. Curation involved judgment of multiple topics. Dr. Vartabedian expressed his belief that physicians must become accustomed to being rated on consumer-facing websites like Healthgrades.com. They both emphasized the importance of blogging clinical experiences once or twice per month. Neither of them believed robots would be taking care of patients in the future.
Digital Health Gone Global
The New Pharma panel followed The New Team presentation on Friday. Jamia Crockett (ePatient Scholar, U.S.A.) moderated a panel on what pharmaceutical companies were doing to innovate in healthcare. Ruchin Kansal (Boehringer Ingelheim) spent much of his time delineating a central problem: the majority of patients do not know who makes the medications they take. Kevin Clauson, Pharm.D. (Lipscomb University) made a comment about how pharmacy technicians and pharmacists needed to be educated about connected health devices. For every dollar we invested in patient satisfaction, the patient received $4. He brought awareness to the issue of scaling for these models, however. Medicine X ePatient scholar Matthew Charron steered the conversation towards the issue of open access to scientific information. He stated that 50% of clinical trial data were never publicly published. Notably, he called out Abbott Pharmaceuticals for making $5.6 billion off of some basic clinical trial data over the course of six months. Joseph Kim (Eli Lilly) shed light on changing the model for how patients were treated during clinical trials. The old pharmaceutical company model kicked patients to the curb after a clinical trial was over. The new pharmaceutical company model would update patients on the outcomes of the clinical trial and send thank you cards to the patients after the trial was over.
Denise Silber (Doctors 2.0) gave Stanford Medicine X an update on “all things digital health” in Europe. She mentioned several start-ups that participated in the iHealth Challenge. Umanlife is a French web platform whose inscription, online health record, and calendar were free of charge to use. Esperity is a Belgian social media company that connects cancer patients to share their stories and improve their quality of life. Medivizor is a social media company that provides a means for patients with chronic illness to communicate with each other and their providers. Kosmo is a smart, connected vaporizer that, when paired with a smartphone, can help users track their smoking habits. The company claims that the vaporizer makes it easier for users to see trends, check progress, and reach their smoking goals. Louise Schaper (Health Informatics Society of Australia) gave Plenary Hall an update on digital health current events in Asia. She had three focus points for her talk: 1) Design, build, and implement new technologies with good health informatics foundations; 2) Invest in health informatics; and 3) Invest in creating positions for specialist health care professionals.
Diabetic Teddy Bears from Sproutel, emerging technologies in mental health, and academic research in social media—these were just some of the components of Medicine X 2014 that executive director Dr. Larry Chu added this year. With the advent of utilizing Twitter and Facebook to identify patients with certain disease conditions, and potentially recruiting them for clinical trials, the value of ePatients has come to surface. As a result, pharmaceutical companies need to treat the patients participating in clinical trials better (e.g. keep them updated on the results of clinical trials and send thank you cards). Similar to the WLSA Convergence Summit 2014, the consensus among speakers at Stanford Medicine X was clear: the activated, engaged patient will disrupt the current healthcare system. This conference, better than any other, demonstrated that innovation comes at the intersection of different fields. Only at Medicine X will you find such a family-oriented environment between ePatients, student scholars, designers, healthcare professionals, and digital health experts.