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:
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.
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…
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.
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.