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.
Moving Beyond Population Averages: A Patient-Centered Research Agenda Advancing Personalized Medicine
Cynthia A. Bens, Senior Vice President, Public Policy
David L. Davenport, Manager, Public Policy