Taking it to the next level: Practical approaches for evaluating the community risks and benefits of research

Introduction: To ensure the ethics 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 gain an in-depth understanding of ethical issues they consider and how these may be applied to assessment of CEnR, CCPH partnered with five community-based organizations to conduct a cross-case analysis.

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 revealed ethical considerations routinely considered by community-based review processes and typically not assessed by institutional IRBs. We will present a case example of a CEnR proposal to demonstrate how community-based review processes promote community engagement and assess for community priorities and considerations. This added level of considerations recognizes communities as major partners in research by actively seeking ways to include community input on research.

Discussion: The discussion will focus on ways to evaluate a CEnR research proposal to promote community engagement and the consideration of community-level ethical issues.