Research

Research

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

Background

Funded through a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (10438-PMC), PMC convened patients, patient advocates, caregivers, health care professionals and academic researchers over 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 organized 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 then invited 55 patients, researchers and health care providers to three virtual roundtable sessions, during which participants translated the principles into research questions. 

The final report, Moving Beyond Population Averages: A Patient-Centered Research Agenda Advancing Personalized Medicine, defined 45 research questions for personalized medicine across nine areas of special concern for patients. These research questions should inform future studies that will provide patients, caregivers, and health care professionals with the information they need to make more informed health care decisions and, ultimately, improve the delivery of personalized medicine to patients in ways most meaningful to them. PCORI, public-private partnerships, private foundations and other entities interested in all patients receiving personalized medicine could fund these studies.

Below, you can find recordings and related materials for the patient-centered web forum series and roundtable sessions.


Roundtable Session 3: Thursday, June 25, 2020


Patients, patient advocates, health care professionals, researchers, and other stakeholders from diverse backgrounds, disease areas, and with varying levels of experience with personalized medicine convened for a series of virtual roundtable discussions to discuss topics for a patient-centered research agenda advancing personalized medicine. 

During Session 3, participants focused on identifying research topics with the potential to change the health care system for personalized medicine in the context of patient-centered principles PMC had previously developed through a series of web forums with the patient community.

Resources:


Roundtable Session 2: Monday, June 22, 2020


Patients, patient advocates, health care professionals, researchers, and other stakeholders from diverse backgrounds, disease areas, and with varying levels of experience with personalized medicine convened for a series of virtual roundtable discussions to discuss topics for a patient-centered research agenda advancing personalized medicine. 

During Session 2, participants focused on identifying practical research topics to improve the delivery of personalized medicine in the context of patient-centered principles PMC had previously developed through a series of web forums with the patient community.

Resources:


Roundtable Session 1: Friday, June 19, 2020


Patients, patient advocates, health care professionals, researchers, and other stakeholders from diverse backgrounds, disease areas, and with varying levels of experience with personalized medicine convened for a series of virtual roundtable discussions to discuss topics for a patient-centered research agenda advancing personalized medicine. 

During Session 1, participants focused on framing research questions in the context of patient-centered principles for the agenda, which PMC had previously developed through a series of web forums with the patient community.

Resources:


Web Forum # 4: Tuesday, January 28, 2020


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. 

Resources:


Web Forum # 3: Thursday, May 16, 2019


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.

Resources:


Web Forum # 2: Thursday, January 31, 2019


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.

Resources:


Web Forum # 1: Wednesday, October 31, 2018


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:

PMC shared a "Call for Webinar Participants" here to invite patients, patient advocates, caregivers, health care professionals and academic researchers to participate in the web forum series.


Contact

David Davenport
Project Manager, 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