Glossary of Patient Engagement Terms

Glossary of Patient Engagement Terms


The definitions of these terms, which includes Family Caregiver, Meaningful Engagement, and Patient-Focused Drug Development, stem largely from our patient engagement work, including our ‘Patient-Focused Drug Development -  Recommended Language for Use in Guidance Document Development’ Paper with Genetic Alliance, as well as our Value Rubric, and Representativeness Rubric.


Successful COAs: It all starts with the “concept of interest” and “context of use”

Feb. 20, 2019 - This webinar featured T. Rosie Love, MPH, University of Maryland School of Pharmacy, Dept. Pharmaceutical Health Services Research

Science of Patient Engagement Symposium

The annual National Health Council (NHC) Science of Patient Engagement Symposium for medical, scientific, and research leaders is a two-day meeting held in the fall each year in Washington, DC (2019 date to be determined). This meeting focuses on the science of patient engagement and was formerly called the Chief Medical/Science Officers Conference. Research leaders share - with a broad scientific audience - their experiences, accomplishments, best practices, and resulting impacts on medicine and science regarding patient centricity.

NHC Job Bank

The National Health Council has created this special page for its members to post job openings and to foster the unique talent pool of patient advocacy organizations. For more information on posting a job, click here.



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