The Challenge of Community Representation

J Empir Res Hum Res Ethics. 2016 Oct;11(4):311-321. doi: 10.1177/1556264616665760. Epub 2016 Sep 16.

Abstract

Although community advisory boards (CABs) are widely used in clinical research, there is limited data regarding their composition and structure, especially in Africa. Our research provides the first qualitative study of the membership practices, selection methods, and qualifications of the six major HIV research centers that comprise the Ugandan National CAB Network (UNCN). Researchers conducted interviews ( n = 45) with CAB members and research liaisons at each of the sites. While selection practices and demographics varied between the sites, all six CABs exclusively followed a broad community membership model. Results suggest successful CABs are context dependent and thus distinct guidelines may be needed based on variables including CAB funding level, representation model, and research focus.

Keywords: Africa; CABs; HIV/AIDS; Uganda; broad community versus population-specific membership model; clinical trials; community advisory boards; research ethics.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Advisory Committees*
  • Biomedical Research*
  • Community-Based Participatory Research*
  • Community-Institutional Relations*
  • HIV Infections*
  • Humans
  • Residence Characteristics*
  • Uganda