A community coalition board creates a set of values for community-based research

Abstract

Background: Researchers generally agree that communities should participate in the community-based research process, but neither a universally accepted approach to community participation nor a set of guiding principles exists.

Context: The Morehouse School of Medicine Prevention Research Center was established in 1999 with the support of a grant from the Centers for Disease Control and Prevention. Its partners include a low-income, predominantly African American community, six public agencies, and two other academic institutions. A Community Coalition Board was established to represent the partners. The majority of the board is community members; it serves in a governance rather than an advisory capacity, with the community acting as the senior partner in interactions with the medical school, the agencies, and other academic institutions.

Methods: The Community Coalition Board developed a set of research priorities and a set of 10 community values, or principles, to guide research. A board committee reviews each protocol to ensure they uphold the values.

Consequences: The Community Coalition Board has been using the values since 1999, and in this article we describe its experience. After an initial period that included some disagreements between researchers and community members on the board, relationships have been good, and protocols have been approved with only minor changes.

Interpretation: Although the established community values reflect universally acknowledged principles of research ethics, they also address local concerns. An equal partnership between community members and researchers is most beneficial if the partners can agree on a set of values to govern research.