Promising practices and recommendations for community-based research ethics review processes: Findings from a national collaborative study

Introduction: To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. We conducted a national collaborative study documenting the contributions they make to ensure the ethics and integrity of community-engaged research (CEnR). To identify best practices in ensuring the ethics of CEnR, CCPH partnered with five community-based organizations to gain an in-depth understanding of how their review processes function.

Approach: In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. In year two, we conducted a cross-case analysis drawing on the individual case studies and a focus group held with the study team.

Results: Cross-case analysis of the 5 community-based research review processes revealed shared policies and practices that support their focus on community-level protection.  The findings revealed a number of promising practices and recommendations for community groups, institution-based IRBs, funding agencies and policy makers.

Discussion: Our study findings uncover the contributions that community IRBs and community-based research review committees make in ensuring the ethics of CEnR. Our discussion will focus on next steps to support the continued development and enhance the effectiveness and impact of community-based research review processes.