A collaborative approach to the recruitment and retention of minority patients with diabetes in rural community health centers
Introduction
While federal requirements for inclusion of minorities and women in federally funded research [1], [2] has resulted in increased representation of these groups, there is still room for additional improvement [3]. Recruitment from within the community health center setting may be ideal, as the population served, particularly in rural areas, is predominately women [4]. Yet this environment can be challenging due to numerous factors including Health Information Portability and Accountability Act (HIPAA) regulations [5], organizational readiness [6], [7], trust, and participant and physician interest and motivation [8], [9], [10], [11]. A relationship between the academic institution and the community health center based on mutual respect is critical to facilitate translational research [12], [13], [14], [15]. Furthermore, involvement by community health center personnel and health system infrastructure may be vitally important to efficiently conduct research in terms of the successful recruitment and retention of subjects.
The American Diabetes Association (ADA) has advanced evidence-based clinical practice guidelines [16]; however these guidelines are often unmet [17], [18], [19], particularly in medically underserved communities [20], [21]. Telemedicine technologies exist that may enhance adherence to clinical practice guidelines [22], [23], [24], [25]. We are conducting translational research to evaluate telemedicine using interactive videoconferencing to increase the availability of health professionals in rural underserved communities for the effective delivery of a diabetes self management education program (Diabetes TeleCare or DTC) and as a means to provide retinal assessments in the primary care setting. Key study outcomes include metabolic status (glycated hemoglobin (GHb), lipids, blood pressure, frequency of retinal examinations), self-management behaviors, quality of life and cost effectiveness. The study is set in a Public Health Service-designated medically underserved community with a relatively high proportion of African American residents, a population in which the prevalence of diabetes is higher, and metabolic control is worse, compared to non-Hispanic white populations [26], [27].
We describe herein our translational research experience with community health centers in rural medically underserved areas. Our goal is to share strategies that led to a productive collaborative research environment between the health centers in South Carolina and the academic research institution located more than 100 miles away. Planned activities that were designed to establish relationships, foster ownership of the research process, and build trust ultimately resulted in the successful recruitment, randomization and retention of ethnically diverse participants. Specifically, participants were randomized to either: 1) a 13 session self-management intervention conducted by a nurse/certified diabetes educator and dietitian using videoconferencing, and an ophthalmologist via remote retinal interpretation or 2) usual care. Our research methods may be of interest to the reader who desires to establish a collaborative research environment with community health centers in rural underserved communities for the purpose of conducting translational research.
Section snippets
Setting
The South Carolina Primary Health Care Association (SCPHCA) is a consortium of federally qualified health centers (FQHCs) across the state. FQHCs must serve an underserved area or population, offer a sliding fee scale, provide comprehensive services, have an ongoing quality assurance program, and have a governing board of directors [28]. Our prior work with the SCPHCA has led to the identification of FQHCs in which we successfully conducted research resulting in positive working relationships
Collaboration and trust
Of paramount importance was the development of strategies that fostered collaborative relationships and trust before translational research activities began. For example, in-person visits to the community health centers were organized to assess organizational resources, barriers, interest and needs prior to initiating the research. These visits took the form of meetings with key staff identified by the upper management at the community health centers. Overall, 90% of the community health center
Discussion
We report our recruitment and retention strategies and the baseline characteristics of participants in a randomized clinical trial designed to evaluate the effectiveness of a telemedicine-facilitated diabetes self-management intervention, which included a retinal assessment and was implemented in a rural, medically underserved community. Diabetes TeleCare Study planning from the earliest inception involved community health center personnel to understand and communicate the needs of the
Acknowledgement
Supported by the National Institutes of Health through the National Institute of Diabetes and Digestive and Kidney Diseases (1R18DK067312). We would like to thank Ann Lewis, CEO, providers, staff and patients at CareSouth Carolina, Inc. for their participation, without which we could not have completed the work.
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