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

Abstract

BackgroundUnderrepresentation 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 ContextWe 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.MethodsBuilding 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.OutcomeNewly 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.InterpretationOur 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.

A Case Study of Engaging Hard‐to‐Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)®

“…We intentionally sought to recruit people who are not connected with academia, research, healthcare, or local power structures. Unlike recruitment for many CABs, we did not establish specific inclusion criteria, such as residency in a certain neighborhood or diagnosis of a particular health condition (Stewart et al, ). We asked community center staff (CARDS liaisons) to recruit typical users of services at their centers.…”

Lessons learned from using an audience response system in a community setting for research data collection

“…Examples of such questions included reported general health in adults and children, use of specific health care resources in the past year, and screening behaviors (e.g., screening for breast cancer). Instrument development is described elsewhere (Yeary et al., ; Stewart et al., ). Because of the low literacy rates in the region and the evidence of engagement and novelty of ARS, it was used as the data collection method.…”

“…and a community liaison. The teams were trained by a TCRHN staff member who had utilized the ARS in the community setting on a different project (Stewart et al., ). The trainings occurred at a location convenient for each team in an unstructured format.…”

“…Instrument development is described elsewhere (Yeary et al, 2015;Stewart et al, 2015). Because of the low literacy rates in the region and the evidence of engagement and novelty of ARS, it was used as the data collection method.…”

Community Building Community: The Distinct Benefits of Community Partners Building Other Communities' Capacity to Conduct Health Research

“…Over a 17-month period, community partners surveyed 2,665 Black and 913 White Jefferson County residents, assessing their health concerns, connecting them to resources, and identifying those willing to be recontacted about research opportunities of potential interest (i.e., 85% of Blacks and 88% of Whites). 17 The partnership considered their survey as a “best practice” from Jefferson County to assess community assets and issues.…”