advancing precision medicine through everyone included™
 

Our journey to the White House began with conversations about how patients and participants can be expert partners with researchers in identifying problems that matter most in science and research. Working together with the White House OSTP, our Medicine X program co-created a day-long workshop event at the White House in June 2016 to bring together an Everyone Included convening on the important topic of partnering with participants in precision medicine research.

June 9, 2016 | White House, Washington DC

“You’re in a room where treaties are negotiated, and today it’s covered in sticky notes,” said DJ Patil, PhD, chief data scientist in the Office of Science and Technology Policy, as he welcomed guests on behalf of President Obama to the White House last Thursday. An eclectic mix of health-care stakeholders were there for a special workshop, co-hosted by Stanford Medicine X and the Office of Science and Technology Policy, that was focused on a core principle of the President’s Precision Medicine Initiative — engaging participants as partners in research.

“Forget everything you think you know about medical research and how it’s done,” Larry Chu, MD, executive director of Stanford Medicine X, who is shown at the left, challenged participants. “I’d like you to put on your beginner’s cap and join us today to reimagine a future of medical research where everyone is included.” Chu was invited by the White House to co-create and co-host this unique event in recognition of Medicine X’s leadership in precision medicine and engaging patients as partners in academic medicine.

This workshop also exemplified Medicine X’s Everyone Included (a trademarked phrase) values, bringing together a diverse group of health-care stakeholders to brainstorm ways to improve medical research. Patients, students, entrepreneurs, publishers, researchers, government officials and three members from the Department of Anesthesiology, Perioperative and Pain Medicine — Kyle Harrison, MD; Bassam Kadry, MD; and Michael O’Reilly, MD — convened to tackle the challenging questions in research and share their own experiences.

Among the main questions addressed were:

  • How do we have patients help shape research priorities?
  • How can we streamline the research process and help patients find and enroll in clinical trials more easily?
  • How do we involve participants in co-creating research questions and studies?
  • How can we work to better return research results to participants?
  • How do we involve patients in reviewing, publishing and disseminating research results?

The day kicked off with a series of talks that focused on what’s currently working in research and offered examples of partnership with patients. Kate McCall-Kiley, a presidential innovation fellow, addressed the current shortcomings of clinical trials. “Trials are perceived as a last effort and are usually offered at [the end of a patient’s] care,” she said, posing the question how trials would be different if patients co-created them. José Merino, MD, U.S. clinical research editor for the British Medical Journal, shared how the peer-review process at the BMJ was changed to include patients as reviewers.

Following the talks, participants took part in small-group design thinking sessions led by health-care designers. After a few rounds of “speed thinking,” they covered the walls with ideas on making medical research more inclusive. (Among the ideas that emerged: collating a directory of patients interested in participating in research and creating a “matchmaking” system with existing directories of clinical trials.) Discussions continued on Friday morning at Johns Hopkins’ Sibley Innovation Hub, where participants were able to follow-up and elaborate on ideas from the day before.

Everyone Included™ is a framework for healthcare innovation, implementation and transformation based on principles of mutual respect and inclusivity. It is the culmination of six years of co-creation with patients, caregivers, providers, technologists, and researchers at Stanford Medicine X that has resulted in a series of design and leadership principles intended to drive collaborative healthcare innovation efforts. Our work has been field tested and iteratively improved over the past six years at our Stanford programs and convenings worldwide.

Everyone Included™ creates a culture of health in which everyone is trusted and respected for the expertise they bring, where openness and experimentation is the norm, people have personal ownership of health, individual stories have global impact, and the patient voice and choice is a part of all stakeholder decisions.

What does patient partnership look like? The book is still being written. However, at Medicine X, it is being written in partnership with patients. Our recent article, “Nothing about us without us”—patient partnership in medical conferences, published in The BMJ by our Executive Director Larry Chu, MD, and an Everyone Included™ group of co-authors describes the history of patient partnership in medical conferences and imagines what future involvement might meaningfully look like.

How to take action through everyone included™
 

The amazing opportunity and daunting challenge of the Precision Medicine Initiative is to advance medicine and medical research in partnership with patients and participants. How might we move from engagement to action? What were lessons learned from our Medicine X White House workshop event? Perhaps the most important lesson was the value of human connection and collaboration. Our event sparked new patient-researcher collaborations that we believe will lead to exciting new partnerships and discoveries in precision medicine research. Stay tuned for the stories of impact that result!

How might precision medicine engage participants as partners? Nick Dawson and Claudia Williams presented eight ideas at Medicine X in 2015. Everyone Included Precision Medicine Research…

  1. Honors and includes all members as full partners on a team
    Claudia Williams points out that originally, this principle was worded as “includes all patients” as full partners in a team. However, through the design process the team realized research needs to honor and respect all members of a team–patients as well as non-patients. Williams points out that research only works “when everyone is included”.
  2. Is open source
    Methods and data and purpose are shared in Everyone Included™ research. Open source allows and encourages sharing and collaboration so there is a feedback loop between data and results.
  3. Helps patients make decisions
    Everyone Included™ research puts results in context for patients, not abstract terms. Patients and their families should be able to use research information to help make decisions about their health treatment.
  4. Also benefits researchers
    Researchers seek to understand mechanistic and scientific phenomena related to answering questions–they should continue to glean these benefits from research while ensuring patients benefit at well. How might we “watch the game and see the marching band” at the same time?
  5. Is proactively designed for inclusion
    Claudia Williams notes, “History hasn’t shown us how to do this. Nobody should be left out of the equation.” Medicine X and our Everyone Included™ co-creation and leadership model gives design principles for inclusivity as well as six leadership principles to help lead diverse teams.
  6. Evolves as patients and researchers learn together
    Patients and researchers should learn together. We need to find a way to iterate within studies and over time. As diverse stakeholders learn from each other, that wisdom should be synthesized to help further refine and drive research innovations.
  7. Is funded based on patient priorities
    Research should also work on problems that matter most to patients and their families. Williams notes this means that we should “make core decisions based upon what’s important to patients”. She notes that patients with Parkinson’s are more concerned about fatigue and GI problems than tremors.
  8. Is well-designed
    Williams challenges us to focus on creating optimal research process, experience, and simplicity. She notes that we can have complex goals, but the experience has to be “beautiful, seemless, and elegant”.

Diverse teams, ones that are composed of patients, in addition to researchers, providers and technologists, will develop the most creative solutions to address the most important problems facing precision medicine. These teams will require considerate leadership, where the expertise of each individual is respected and where  power hierarchies can be flattened where necessary in order to elevate the expertise from the underheard voices in the room and at the table. Below, we share some of our experience with leadership of Everyone Included™ teams.

  1. We believe in respect, not power hierarchies
    This means we recognize and pay respect to the unique expertise individuals bring to the decision-making process and honor that expertise over one’s title or position when making our decisions. Hierarchy is important in all organizations–we just believe linking power with respect isn’t.
  2. Leadership can be flexible
    Leaders and leadership can be fluid and flexible. Flexible leaders cultivate change and innovation while helping the team stay true to the organization’s vision and mission. Flexible leaders surround themselves with talented individuals and recognize their leadership by thinking of themselves as the center of a wheel instead of the top of a pyramid.
  3. Diverse teams lead to more creative solutions
    Teams that have a hierarchal power structure reach decisions fastest, but diverse teams where individuals are valued and respected for the expertise they bring lead to more creative and innovative solutions. Everyone Included™ leadership seeks to create teams that include diverse representation from all health care stakeholders.
  4. Diversity requires considerate leadership
    Considerate leaders think of the collective “we” but also respect, value and acknowledge the unique expertise of the individuals that compose a diverse team. Considerate leadership can help mitigate inherent misconceptions that link power with respect and helps all individuals contribute their fullest potential as a member of a diverse team.
  5. A culture of empathy and consideration requires trust
    All stakeholders can bring inherent biases, misconceptions and misperceptions to a diverse team. Create a culture that values understanding other people’s experiences, helps safely uncover and learn from biases, and seeks to embrace differences and vulnerabilities as a collective strength. Create an environment that addresses the physical and emotional well-being of all members of a diverse team.
  6. Conflict can lead to more creative solutions, but reduce its risk
    Task conflict can help a team consider alternate viewpoints and lead to more creative solutions. Process and relationship conflicts almost never help a team perform better and can threaten team cohesion and viability. Recognize the value of task conflict but manage process and relationship conflict through considerate leadership.

Sometimes people ask us how Medicine X designs the experiences and interactions that guide our work between patients and the diverse communities of researchers, academics, providers, technologists and third parties we bring together through Everyone Included™. We are happy to share with you some of our design principles below, in hopes they can inspire you in your precision medicine co-creation efforts.

  1. Be a rebel
    Lead as health care rebels. Stand up for what you believe health care should be.
  2. Value each person
    Value each person’s knowledge, experience and skills.
  3. Be human
    Create an environment that celebrates and encourages “being human”.
  4. Be human-centered
    Be human-centered in addition to patient-centered.
  5. Co-design
    Promote co-design with patients and health care stakeholders.
  6. Facilitate connection
    Connect stakeholders with aligned interests to facilitate meaningful collaboration and connection.
  7. Treat with dignity
    Treat all people with the dignity they deserve.
  8. Provide a stage
    Provide a stage from which the hardest, most important stories may be told.
  9. Be beautiful and tasteful
    Be beautiful and tasteful by design.
  10. Create magic
    Create magical experiences that surprise and delight your audience.
Patient and participant voices in precision medicine research
 
 

Doug Kanter, Founder of Databetes, on the importance of patient voices to precision medicine research.

 

Matt Erlendson, Yale Medical Student, on the importance of patient-donated data to increase the sample size and diversity of medical research.

 

Michael Seres, ePatient and founder of 11health, notes “the starting point of research should start with me, the end user“.

 

Kirsten Ostherr, Director Medical Futures Lab, on the need to reframe medical research around patient and participant input.

 

Julie Flygare, Founder of Project Sleep, on considerate leadership and Everyone Included™ at the White House event.

 

Bassam Kadry, Director of Technology Discovery, on looking at problems differently in partnership with patients.

 
 

Sarah Kucharski, ePatient and Founder of FMDChat, notes “we all have the potential for this to effect us.

 

Joseph Kim, Senior Advisor in Clinical Innovation, Eli Lilly, on skepticism in partnering with patients in research.

 

Leonard Kish, COO YouBase, on giving individuals the power to control their health information.

 
 

Monika Wittig, Assistant Professor, UC Denver, on offers of help and action at our White House workshop.

 

Dennis Boyle, Founding Partner, IDEO, on need for bringing the user to the design of precision medicine research.

 

Larry Chu, Executive Director, on the importance of our White House workshop in giving voice to participants in precision medicine research.

 

Audun Utengen, Co-founder, Symplur, on new ways for recruiting for precision medicine trials.

 

Hugo Campos, White House Precision Medicine Champion of Change, says “we must liberate clinical data.”

 

Michael Seres, ePatient and 11health Founder, on the unique qualities that facilitate collaboration in the Medicine X community.