Community Engagement in Health-Related Research: A Case Study of a Community-Linked Research Infrastructure, Jefferson County, Arkansas, 2011–2013

BACKGROUND Underrepresentation of racial minorities in research contributes to health inequities. Important factors contributing to low levels of research participation include limited access to health care and research opportunities, lack of perceived relevance, power differences, participant burden, and absence of trust. We describe an enhanced model of community engagement in which we developed a community-linked research infrastructure to involve minorities in research both as participants and as partners engaged in issue selection, study design, and implementation. COMMUNITY CONTEXT We implemented this effort in Jefferson County, Arkansas, which has a predominantly black population, bears a disproportionate burden of chronic disease, and has death rates above state and national averages. METHODS Building on existing community-academic partnerships, we engaged new partners and adapted a successful community health worker model to connect community residents to services and relevant research. We formed a community advisory board, a research collaborative, a health registry, and a resource directory. OUTCOME Newly formed community-academic partnerships resulted in many joint grant submissions and new projects. Community health workers contacted 2,665 black and 913 white community residents from December 2011 through April 2013. Eighty-five percent of blacks and 88% of whites were willing to be re-contacted about research of potential interest. Implementation challenges were addressed by balancing the needs of science with community needs and priorities. INTERPRETATION Our experience indicates investments in community-linked research infrastructure can be fruitful and should be considered by academic health centers when assessing institutional research infrastructure needs.