Research

Research

Moving Beyond Population Averages: A Patient-Centered Research Agenda Advancing Personalized Medicine

Background

Between 2019 and 2020, PMC convened more than 120 patients, patient advocates, caregivers, health care professionals and academic researchers during four web forums and three virtual roundtable discussions 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. 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, including:

  1. patient-provider communication;
  2. patient education;
  3. caregiver, pediatric, and family considerations;
  4. provider education, resources, and collaboration;
  5. access, affordability, and utilization;
  6. coverage and reimbursement;
  7. clinical trials;
  8. new technologies and data management; and
  9. outcomes research.

Empowering Patients, Caregivers, and Researchers

PMC has summarized the results of the Moving Beyond Population Averages study in the 11 briefs provided below. By explaining the significance of the study, introducing the questions that patients identified as being most important across each of the nine focus areas, and providing a glossary of key terms used in the research report, the briefs are designed to empower patients and caregivers to advocate for research initiatives aligned more closely with their interests, preferences, and priorities.

To further empower patients, caregivers, and researchers to take full advantage of the insights from the Moving Beyond Population Averages study, PMC has also written a comprehensive research report that elaborates on the study's methodology, findings, and significance to the future of patient care and personalized medicine. The report is available to download below.

Funded Through a PCORI Engagement Award

PMC's work on the Moving Beyond Population Averages study was funded through a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (10438-PMC).


Briefs for Patients and Caregivers




Introduction



Patient-Provider Communication



Patient Education



Caregiver, Pediatric, and Family Considerations



Provider Education, Resources, and Collaboration



Access, Use, and Affordability



Coverage and Reimbursement



Clinical Trials



New Technologies and Data Management




Outcomes Research




Glossary

Research Report




Moving Beyond Population Averages: A Patient-Centered Research Agenda Advancing Personalized Medicine


Project Lead


Cynthia A. Bens, Senior Vice President, Public Policy


Project Manager


David L. Davenport, Manager, Public Policy