Project Summary

Scientific advances have led to more targeted interventions that are informed by a patient’s biology as well as environmental and behavioral factors. Technological innovation presents opportunities to understand how individual variability affects health, so that treatment may be guided to only those patients who will benefit. However, there are fundamental gaps in awareness and evidence that impact the speed at which personalized medicine products and services are integrated into health care. Personalized medicine and patient-centered outcomes research (PCOR) share the same goal of shifting health care from a one-size-fits-all, trial-and-error approach toward a targeted approach that utilizes patients’ characteristics and preferences to inform healthcare decisions. Despite this clear connection between personalized medicine and PCOR, all relevant stakeholders across the healthcare spectrum have not been engaged in setting a research agenda that is informed by early successes in personalized medicine adoption and builds on principles defined by patients.

Funded by a Eugene Washington PCORI Engagement Award, the Personalized Medicine Coalition (PMC), a nonprofit education and advocacy organization comprised of patients, researchers, innovators, providers, and payers, will convene stakeholders virtually and in Washington, DC, to develop a patient-centered personalized medicine research agenda and establish connections between patients and other healthcare stakeholders that foster collaboration to fill evidence gaps and accelerate more widespread adoption of personalized medicine.

The capacity building project, titled “Moving Beyond Population Averages: Patient Principles for a Personalized Medicine Research Agenda,” will consist of four web forums for up to 100 participants per forum designed and led by PMC and its patient partners. Recordings and presentation materials from each web forum will be publicly posted. Highlights from the web forums will be documented and disseminated as patient principles for personalized medicine. PMC will then establish an advisory committee of patients, researchers, healthcare providers, payers, and policy makers that will meet at least twice by phone. The advisory committee will provide input to PMC on how these principles can best serve as the basis for a discussion on evidence gaps that need to be filled to advance personalized medicine. The advisory committee will further assist PMC in organizing an in-person roundtable meeting based in Washington, DC. The outcome of the meeting will be a research agenda published as a white paper. The long-term goal of this project is to help foster strategic relationships between patients and researchers that encourage patients to participate in future research that advances personalized medicine.

The project is supported by the Addario Lung Cancer Foundation (ALCF) and the National Alliance against Disparities in Patient Health (NADPH). ALCF is one of the largest patient-founded, patient-focused, and patient-driven philanthropies devoted exclusively to eradicating lung cancer through research, early detection, education, and treatment. NADPH is a research network focused on reducing health disparities through science-based community research, technology, education, and training in the health sciences.

Project Information

Cynthia Bens, BA
Personalized Medicine Coalition
$220,000

Key Dates

24 months
2018

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Last updated: November 10, 2022