Abstract 2631: Moving beyond population averages: A patient-centered research agenda advancing personalized medicine
Authors: Bens Cynthia A. , Davenport David L. 
Published: July 2021

Personalized medicine presents opportunities to understand how differences in an individual's biology affect their health so that prevention strategies and treatments are guided to those patients who will benefit. However, there are fundamental gaps in awareness and access that impact the speed at which personalized medicine products and services are integrated into health care. Through a two-year Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI), the Personalized Medicine Coalition (PMC) convened more than 120 patients and other health care stakeholders with interest and expertise in various disease areas, including various cancers, to develop a research agenda advancing personalized medicine built on principles defined by patients. The research agenda defines 45 research questions for improving the delivery of personalized medicine.

The project consisted of a series of four web forums to identify patient priorities, an online collaboration platform to brainstorm related research questions, a virtual roundtable with patients and other stakeholders to finalize research questions, and an advisory committee consisting largely of patient representatives to guide the development of the research agenda. Patients, patient advocates, caregivers, patient advocacy organization representatives, health care professionals, researchers, and other stakeholders representing diverse backgrounds, disease areas, health needs, and with varying levels of experience with personalized medicine participated.

Participants focused largely on their desire for research that could improve the quality and quantity of interactions between patients and providers of health care services, with an emphasis on the importance of education and access. Takeaways from these discussions led to the development of 45 research questions addressing concerns related to:

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

9. Outcomes research.

This research agenda 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 ensuring that all patients receive personalized medicine should fund these studies.

Citation Format: Cynthia A. Bens, David L. Davenport. Moving beyond population averages: A patient-centered research agenda advancing personalized medicine [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 2631.