Online Program

Oral

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 ethics 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. To gain an in-depth understanding of how these review processes function and what impact they actually have, CCPH partnered with five community-based organizations on a NIH-funded study to conduct case studies of their community review processes (CRPs). Two are federally recognized community IRBs and three are community-based review committees. In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents. In year two, we conducted a cross-case analysis drawing on the individual case studies. have for ensuring the research they are involved in is ethical and impactful. The first presentation will describe the aims of the national collaborative study and the novel participatory approach used to conduct the case studies and cross-case analysis. The second presentation will focus on ethics considerations unique to community-engaged review processes in comparison to those typically considered by institution-based IRBs. The third presentation will summarize cross-case findings that document the impact of community-based review processes, articulate promising practices and make recommendations for various audiences, including community groups, institutions, policymakers and funders. In the final presentation, we will identify ways to evaluate a CEnR research proposal using community-level considerations. This added level of considerations recognizes a shift away from viewing communities as passive subjects but as major partners in research by actively seeking ways to include input from communities being studied.

Session Objectives: 1. Demonstrate the range of mechanisms and strategies that communities have for ensuring the research they are involved in is ethical and impactful. 2. Document the impact of CRPs on research and community capacity