AcademyHealth and NORC at the University of Chicago
This report examines the significance of and strategies for improving patient representativeness in research governance and provides examples of governance recruitment and retention practices sourced from literature scans and case study interviews from the PCORI-funded Participant-Driven Research Community Learning Network (PDRC LN) project, which was supported by NORC at the University of Chicago (NORC) and AcademyHealth. With a focus on engaging populations traditionally underrepresented in research in patient-driven research community governance, the report provides detailed descriptions of how PDRCs are doing this work and highlights lessons learned from their experiences.
The report concludes with a set of guiding principles with important implications for both funders and researchers. This resource was developed and provided by a third party. Opinions and information in this content are those of the third party and do not necessarily represent the views of PCORI. Accordingly, PCORI cannot make any guarantees with respect to the accuracy or reliability of the information and data in this content.