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Panel Detail

Workshop - Patients in the Driver's Seat: Precision Medicine and Direct-to-Patient R&D

Tuesday, November 15, 2016
10:30 AM - 11:45 AM


Elizabeth Cohn, Associate Director, Community Engagement Core Resource, Irving Institute for Clinical and Translational Science, Columbia University
Stephanie Devaney, Project Manager, Precision Medicine Initiative, National Institutes of Health
Kathy Giusti, Founder, Multiple Myeloma Research Foundation; Faculty Co-Chair, Harvard Business School Kraft Precision Medicine Accelerator
Juergen Klenk, Principal, Deloitte Consulting LLP
Alexandra Pelletier, Former Presidential Innovation Fellow, White House


Claudia Williams, Senior Advisor, Health Technology and Innovation, White House Office of Science and Technology Policy

Patients in the Driver's Seat: Precision Medicine and Direct to Patient R&D

Claudia Williams of the White House Office of Science and Technology Policy began the session by musing on ways to enable direct-to-patient R&D to accelerate science for all people. She pointed out that it cannot be only a government or regulatory initiative; it must also involve everyone working in the community–in both preventative and traditional health care.

Williams encouraged the group to think about co-production. She does not recommend asking patients to engage with something already created–she wants patients to be involved in every part of the process.

Throughout the session, workshop participants were invited to share their message, ask questions and propose solutions to the issues that currently create challenges for quality, personalized, patient-centric health care.

Elizabeth Cohn of Columbia University referred to a proverb, "If you want to go fast, go alone. If you want to go far, go together." She believes that the Precision Medicine Initiative, now called All of Us, encourages the community to go far and fast together.

Cohn echoed Williams' desire to bring patients to the table from the very beginning, but added that genetic testing and information gathering needs to be more inclusive. Research has often underserved minorities. "We have opportunities to start fresh and start right," she said. Kathy Giusti of the Multiple Myeloma Research Foundation stressed the importance of data sharing in the push toward personalized medicine. Her organization works to motivate academic institutions to share their data, including data on patients who are outliers in the treatment process. One method to achieve this goal is to create a precompetitive consortium at the beginning of the research process.

Although great strides have been made and platforms to enable sharing of growing bodies of work and data have been created, it's important to keep moving forward. There are new drugs and lengthened lives, but many diseases are still incurable.

Panelists and workshop participants alike agreed that there is a need to create a movement surrounding precision medicine. Researchers must build trust with patients, as well as healthy individuals, to encourage their engagement with research and health care as a whole. Building research and screening practices into the community through recreation centers, churches and other community groups provides a path to become a part of the research participant's life and to better understand his/her lived experience.

Stephanie Devaney of the National Institutes of Health (NIH) noted the serious need to ensure that precision medicine is available to everyone from a participation standpoint, including interested researchers. Overcoming this challenge will involve ensuring that people have open and easy access to their own health data.

Former Presidential Innovation Fellow Alexandra Pelletier agreed by stressing the importance of taking research to the patient–wherever the patient is. Doctors and researchers need to show patients how they can incorporate clinical trials into clinical care. "We've built a lot of cities in this ecosystem, but we haven't built the roads to connect them. We need to get the information out there," she said. Researchers often don't consider the user experience of research. They must start to consider what they are requesting of participants and to think about ways to increase (and communicate) the value of participating in research to individuals. Juergen Klenk of Deloitte Consulting focused on the importance of early detection of diseases. The earlier a patient gets a diagnosis, the more time he or she has to try different treatments to find the best fit. "PMI changed its name to All of Us, which means to me that it's not just about when you have a disease, but also prevention and early detection," he said.

Certain individuals and groups feel excluded from the discussion. It is important to create new and more inclusive collaborations that give people a chance to voice their concerns and ask the questions that matter most to them. These unique perspectives can improve patient care and innovate clinical trail design to increase effectiveness and value.

At the end of the session, Williams asked the panel participants to share what resonated with them about the discussion, including key takeaways. Panelists agreed that there is a strong need to keep government funding in research (particularly the NIH and the All of Us program), data should be treated as a common resource, and better communication is necessary to ensure that patients understand the value of participating in research.