By: Omar A. Escontrías, DrPH, MPH, Vice President. Research, Education & Programs. National Health Council

The National Health Council (NHC) is excited to launch a new project entitled, A Workshop Discussion with the Patient Community: Patient-Centered Outcome/Impact Repository. This project falls within the scope of the NHC’s Research & Programs Department patient engagement and value assessment portfolio.

Background

Do you ever wonder what it would be like to have data at your fingertips and in one location? We seek to explore this concept through this new project. Due to the diffuse and scattered nature of disease-specific patient-centered outcome and impact data, researchers have been increasingly interested in a centrally accessible repository. The views of patient advocacy groups, who constitute a large generator of these data, have not been fully explored in this space.

To better understand these key views, the NHC will convene member patient advocacy group representatives to discuss a potential patient-centered outcome/impact repository. The workshop will explore what type of data the repository could include and study eligibility. After completion of the workshop in Fall 2022, the NHC will publish a summary of recommendations set forth by the convening members.

This project was funded by the Pharmaceutical Research and Manufacturers of America (PhRMA).

Questions?

Please email NHCprograms@nhcouncil.org if you have any questions about this project.