Funded by a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI), PMC is convening patients, patient advocates, caregivers, health care professionals and academic researchers in a two-year project to develop a patient-centered research agenda identifying evidence gaps that must be filled to ensure personalized medicine treatment strategies better align with priority patient outcomes.
In the first year of the project, PMC will organize a series of four web forums to develop a set of patient-centered principles that will inform the research agenda. During the second year, the Coalition will then invite approximately 45 patients, researchers and health care providers to an in-person roundtable in Washington, D.C., at which participants will translate the principles into research objectives. Finally, PMC will publish the complete research agenda in the form of a white paper.
To download a list of the project's Advisory Committee members, please click here.
During the fourth and final web forum, Cynthia A. Bens, PMC's Senior Vice President, Public Policy and Project Lead, and David Davenport, PMC's Manager, Public Policy and Project Manager, discussed proposed principles for the research agenda based on participant feedback from the first three web forums, and moderated a discussion to finalize those principles. These principles will inform the scope, content, and impact of the project as it moves forward and identify how to make the Personalized Medicine Coalition's patient-centered research agenda for personalized medicine most helpful to patients.
During the next phase of the project, where PMC will translate these principles into research topics for a patient-centered research agenda for personalized medicine, participants will be invited to an online collaboration platform to suggest, refine and prioritize potential research topics. If you are interested in joining the platform to contribute ideas, or have any questions, please contact David Davenport, PMC Manager, Public Policy and Project Manager, at email@example.com.
During our third web forum, participants reviewed proposed principles for the research agenda based on feedback from the previous two web forums, and Cynthia A. Bens, PMC Senior Vice President, Public Policy and Project Lead, led a moderated discussion to develop additional principles. These patient-centered principles will inform the scope, content, and impact of the project and identify how to make a research agenda for personalized medicine most helpful to patients.
Feedback received during the web forum will inform the fourth and final web forum slated for January 2020 where participants will finalize these principles. Meanwhile, PMC will form the project’s advisory committee and begin planning the in-person meeting to develop the research agenda.
During our second web forum, guest speakers who have led similar projects funded by the Patient Centered Outcomes Research Institute (PCORI) to establish patient-centered research agendas shared their models for developing research agendas with patient input and lessons learned. Our guest speakers included Mary Jane Marchisotto, Senior Vice Present of Research and International Operations, Food Allergy Research & Education (FARE) and Paul Gross, Chairman and Founder, Cerebral Palsy Research Network (CPRN). Following their remarks, web forum participants provided feedback on how to make our patient-centered research agenda for personalized medicine most helpful to patients.
During the first web forum, guest speakers from the Bonnie J. Addario Lung Cancer Foundation including David LeDuc, Executive Director, and Danielle Hicks, Associate Director of Patient Services and Programs, shared how personalized medicine is transforming lung cancer care and discussed challenges for lung cancer patients in accessing personalized medicine. Following their remarks, web forum participants provided feedback to assist PMC in identifying principles for a patient-centered personalized medicine research agenda.
Project Manager & Financial Officer, PCORI Engagement Award
Manager, Public Policy & Secretary to the Board
Personalized Medicine Coalition
Cynthia A. Bens
Project Lead, PCORI Engagement Award
Senior Vice President, Public Policy
Personalized Medicine Coalition