Reimagining Research at the White House
Editor’s Note: Erin Moore is a marketer turned ePatient and health care innovation consultant. Her life story has been deeply affected by all five of her children, but particularly Drew, her 8-year-old son who has cystic fibrosis. She is passionate about building connections between all of the stakeholders in health care, working to identify unmet needs, design and test innovations to improve care and outcomes, bridge the patient and clinician communities, and ensure the perspective of families and patients are represented in all health care improvement efforts. Erin was the first ePatient Advisor for Lilly Trials.
In January of 2015, President Obama made a commitment to our country to focus on a precision approach to health care improvement. The goal of this initiative was to identify better ways to get the right information to the right person at the right time, every time. As the parent of a child with a rare, genetic disease, I was honored to be present at the White House for the announcement of this initiative and excited by the hope that it offered. I believe that there is an opportunity beyond science and molecules to learn from and utilize the lived experiences of individuals through people and the networks in which they live and thrive.
On June 2, 2016 one of these incredible networks gathered together at the White House to discuss how we might engage participants in research as partners. Stanford’s MedicineX Conference partnered with the White House to facilitate connection and spark discovery among some of the best and brightest in health care, including patients, caregivers, clinicians, scientists, journalists, industry professionals and many others. MedicineX is a movement involving technology, people and design, and how we can combine these things to create change in health care.
MedX Executive Director Dr. Larry Chu shared his thoughts on our need to connect with others and how that reflects our need to be felt by others. In health care, we often operate in silos, and the purpose of the meeting last week was to reimagine research and how partnerships can help us to achieve that to ultimately transform outcomes. I had the great pleasure of attending this meeting with two colleagues from Lilly Trials: Joe Kim and Jerry Matczak.
DJ Patil, the Chief Data Scientist for the United States of America, set the tone for our meeting by sharing a note from the President that he carries with him:
“Everything we do needs to be infused with a sense of possibility. We are not scared of the future.”
He shared the White House’s commitment to the work that we are all doing. He also invited us to ask for what we need, and to be specific about how the White House can act our behalf. Invitation accepted!
While everyone in attendance was noteworthy, several folks were invited to share some of the amazing work that they were doing. We learned about:
- World Parkinson’s Congress: how they engage patients to identify research priorities and how they get researchers to accept patients as team members and peers by creating partnerships that give a name and a face, a purpose to research. Their work focuses on a realization of a shared humanity.
- Vital Crowd: a platform designed to crowd source clinical trial design.
- Gallaudet University: advances in communication as demonstrated by a deaf professor and a deaf-blind colleague.
We discussed “deliverables” in research, the stuff people get at the end of a research study and asked the question “What are patients getting?” We talked about the challenges in getting data back to research participants, actual and artificial barriers, and shared ideas for how we might overcome them.
In a formal White House meeting room—a place where treaties have been negotiated—sharpies were scattered about the tables and the walls quickly filled with Post-It notes from folks sharing their ideas for how we can create a seamless process for finding and enrolling in research, make the research experience delightful, co-create research opportunities, and publish and disseminate the results together. We broke into small groups and were challenged to think big in creating “How might we…” statements to move us from admiring the problems to creating solutions.
While many incredible ideas were shared and partnerships formed in an effort to move this work forward, I’ll end by sharing a few inspirational “How Might We” questions that the teams generated:
- How might we incentivize data holders to share their results with participants?
- How might we make data sharing secure, private, easy and seamless?
- How might we use digital data to enable matching to clinical trials?
- How might we bring trusted awareness to clinical trials?
- How might we engage participants early in priority setting in research?
- How might we shift the conversation from “data ownership” to “data citizenship”?
- How might we make clinical research delightful?
- How might we include people as expert partners in research?
I know all of the folks in that room would be grateful to have others join them in their efforts to move these ideas from concept to practice. They would also be thrilled to join you in work that you may be doing as well. Contact us through @LillyTrials on Twitter if you’re interested in getting involved.
Blog post originally appeared on LillyPad.
We always welcome input from the larger clinical research community—patients, caregivers, researchers—and periodically feature their voices on our blog. Hearing from them gives us new viewpoints and insights in making research better.