Research participants” feedback about their participation experiences offers critical insights for improving programs. A shared Empowering the Participant Voice (EPV) infrastructure enabled a multiorganization collaborative to collect, analyze, and act on participants’ feedback using validated participant-centered measures.

A consortium of academic research organizations with Clinical and Translational Science Awards (CTSA) programs administered the Research Participant Perception Survey (RPPS) to active or recent research participants. Local response data also aggregated into a Consortium database, facilitating analysis of feedback overall and for subgroups.

From February 2022 to June 2024, participating organizations sent surveys to 28,096 participants and received 5045 responses (18%). Respondents were 60% female, 80% White, 13% Black, 2% Asian, and 6% Latino/x. Most respondents (85–95%) felt respected and listened to by study staff; 68% gave their overall experience the top rating. Only 60% felt fully prepared by the consent process. Consent, feeling valued, language assistance, age, study demands, and other factors were significantly associated with overall experience ratings. 63% of participants said that receiving a summary of the study results would be very important to joining a future study. Intersite scores differed significantly for some measures; initiatives piloted in response to local findings raised experience scores.

RPPS results from 5045 participants from seven CTSAs provide a valuable evidence base for evaluating participants’ research experiences and using participant feedback to improve research programs. Analyses revealed opportunities for improving research practices. Sites piloting local change initiatives based on RPPS findings demonstrated measurable positive impact.

Over the last couple of decades, there has been a growing awareness of the value of community-engaged research (CEnR). Simultaneously, many academic institutions have established centralized support for CEnR. For example, dozens of academic medical centers in the United States receive National Institutes of Health (NIH)-funded Clinical and Translational Science Awards (CTSAs) and have embedded community engagement programs (CE) whose primary expertise and mission is to advance CEnR at their institutions.

As part of a larger interview study aiming to learn more about how institutional CE programs and HRPPs work together, we analyzed interviews with CE program leaders at academic medical centers that receive funding from the NIH CTSA program to identify barriers and strategies to conducting CEnR at their institutions, primarily focusing on the relationships with Institutional Review Boards (IRBs).

We identified three categories in the interviews: barriers and strategies vis-à-vis IRBs to address 1) CE/IRB relationships; 2) Understanding issues; and 3) Structural and resource issues.

CTSA CE program leaders have experience implementing solutions to common barriers to IRB review faced by CEnR researchers. The barriers they face in these three categories and the strategies they use to overcome them can provide helpful insights to others who hope to facilitate CEnR research at their institutions.