Research

Moving Beyond Population Averages: Patient Principles for a Personalized Medicine Research Agenda

Background

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.

For more information about how to participate in these web forums, please download a "Call for Webinar Participants" here or contact David Davenport at ddavenport@personalizedmedicinecoalition.org

Web Forum # 1: Wednesday, October 31


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. 

Resources:

Comments:
To share comments and ideas about the topics raised in the web forum, please email David Davenport at ddavenport@personalizedmedicinecoalition.org

Web Forum # 2: Thursday, January 31, 2019
12:00 - 1:30 p.m. ET

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 will share their models for developing research agendas with patient input and lessons learned. Our guest speakers include: 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 our guest speakers' remarks, Project Lead and PMC Senior Vice President, Public Policy, Cynthia A. Bens, will lead an open discussion among web forum participants on how to make our patient-centered research agenda for personalized medicine most helpful to patients.

Resources:

  • These will be uploaded after the event.

Contact

David Davenport
Project Manager & Financial Officer, PCORI Engagement Award
Manager, Public Policy & Secretary to the Board
Personalized Medicine Coalition
ddavenport@personalizedmedicinecoalition.org

Cynthia A. Bens
Project Lead, PCORI Engagement Award
Senior Vice President, Public Policy
Personalized Medicine Coalition
cbens@personalizedmedicinecoalition.org