In the scope of health services research and community engagement, it is essential to strategically engage groups or individuals that are often overlooked which includes those in rural geographies. Rural populations are defined by several parameters, including population density, U.S. Census rates, previously defined Metropolitan areas, and the area codes to which individuals commute for work (Hall, Kaufman, & Ricketts, 2006). Research has suggested that rural communities tend to have more elderly persons, higher rates of unemployed persons, higher percentages of poor and uninsured, and higher prevalence of chronic diseases (Puma et al, 2017; Murimi & Harpel, 2010; Buckheit et al, 2017). Studies have suggested that rural populations are more vulnerable than urban ones for these reasons as well as fewer health care providers, fragility of hospitals, and dependency on Medicare and Medicaid (Hart, Larson, & Lishner, 2005; Murimi & Harpel, 2010; Kilpatrick, 2009). Rural health centers have been shown to have fewer health therapy options and a lower volume capacity for patients, supporting the possibility that rural hospital patients may have different health topic priorities compared to urban populations (Ricketts, 2000; Erwin et al., 2010). Of the 159 total counties in the state of Georgia, 120 are considered rural, which is defined as having 50,000 persons or less residing in said county (State Office of Rural Health, 2020). Because of the large number of rural counties in the state, it is important to identify the priorities of rural community members from their perspective.
The engagement of community members in research often fits within the category of community-based participatory research. It empowers community members to participate in research by integrating them within the research team (Blumenthal & DiClemente, 2013; Coughlin, Smith, & Fernandez, 2017; Eder et al., 2018). Community members are involved in community-engaged research at various levels, from survey response to research design to sitting on community advisory boards. A goal of engaging the community in research can be to improve the physical health outcomes of participants. Studies have investigated the impact that community-based participatory research can have on community health and have identified various routes by which this may happen, including strengthening interventions via community insight as an added value to participation for enhancing health (Wallerstein and Duran. 2006). Using community-engaged research contributes to meeting a defined end, including increased participation and retention in future health research, reduced neonatal mortality rates, and simply to gain insight into the priorities and needs of the community (Domecq et al., 2014; Bath & Wakerman, 2015; Etchegary et al, 2017).
Initiatives such as Rural Healthy People 2020 have formalized the process of surveying rural communities and began with Healthy People 2010, which focused on improvements specifically in rural health (Bellamy, Bolin, & Gamm, 2011). This initiative identified chronic diseases such as diabetes, heart disease, and stroke, as well as access to quality health care services, were top priorities from respondents (Bellamy, Bolin, & Gamm, 2011; Gamm & Hutchison, 2003). Upon assessing the health priorities of rural community members, researchers have suggested that rural residents focus more on water pollution and sewage/water issues more than urban residents, who are more focused on built environment issues and air pollution (Wu et al., 2017; Bernhard et al, 2013). Surveys of Spanish-speaking farmworkers and rural Scottish community members have identified that chronic diseases, including diabetes and hypertension, were the two most common health topic priorities (Buckheit et al., 2017; Farmer & Nimegeer, 2014).
For nearly 15 years, originally the National Center for Research Resources (2007–2012), and the National Center for Advancing Translational Sciences (2012-present) of the National Institutes of Health (NIH) has supported a nationwide network of Clinical and Translational Science Awards “hubs”, or funded academic health centers that serve as catalysts for clinical and translational science (Califf & Berglund, 2010; Leshner, Terry, Schultz, & Liverman, 2013; NCATS, 2020). Each hub, in turn, supports investigators, trainees, and their projects through an array of programs designed to turn discoveries in the laboratory, clinic, and community into medical treatments and health practice. Although hubs typically have a mission to support research within their institutions, many also collaborate across institutions, across Clinical and Translational Science Award hubs, and with colleagues across the country and world. This pooled expertise has the common goal of accelerating the translation of basic science discoveries into interventions to improve health.
The Georgia Clinical Translational Science Alliance is an alliance between Emory University, Morehouse School of Medicine, Georgia Institute of Technology, and the University of Georgia. The alliance is an inter-academic institutional magnet that concentrates basic, translational, and clinical research investigators, community clinicians, professional societies, and industry collaborators in dynamic clinical and translational research (Georgia CTSA, 2020). The Georgia CTSA was formerly the Atlanta Clinical Translational Science Institute (2007–2017) and consisted of primarily urban academic institution partners. Upon funding renewal, in 2017, the alliance now represents an expansion to include the University of Georgia, which boasts longstanding relationships with and service to rural Georgia.
Georgia CTSA CE Program aims to support community-university research partnerships, to facilitate community input into university research, and to increase health research in community settings that is both responsive and relevant to the health needs of the community. The CE Program supports community-university research partnerships through a required Master’-level course, community- and university-focused research capacity building workshops, pilot awards and research studio consultations that facilitate community input or co-creation of research with academic partners and increases health research in community settings (Henry Akintobi et al., 2016; Kegler et al., 2016; Rodgers et al., 2014). Together these activities are designed to enhance public trust and capacities community-engaged clinical and translational research.
The CE Program maintains a Georgia CTSA CE Steering Board as a governance structure designed to ensure that research findings and related innovations are translated to practice. Administratively support by the CE Committee, comprised of partner academic institution faculty and staff, the Steering Board strives to overcome historical trends that impede translation to the community when research, community, and agency experts do not work together as equal partners and as a single body with established rules guiding roles and functions (Henry Akintobi et al., 2011, Henry Akintobi et al., 2014). With decades of experience in community engagement research, the Steering Board maintains a community majority membership and bylaws that require that the Chair, Vice-Chair and Secretary are community representatives. The Board meets quarterly to lead CE and will also provide guidance to Georgia CTSA investigators who conduct research in the community.
To meet the goals of engaging with the community, the Georgia CTSA CE Program is involved with community-based organizations across the state of Georgia through both the Committee and the Community Steering Board. The Cooperative Extension Service at the University of Georgia provides a bridge between the academics at a university and the community at large. The Cooperative Extension Service exists throughout the United States through 112 land-grant universities to diffuse research-based information and encourage its application among citizens (Smith-Lever Act, 2008). The State Office of Rural Health has been a strategic partner of the CE Program that has been engaged in a variety of projects, including hosting two grant-writing academies for community-based organizations and health centers across the state. Other organizations represented on the Community Steering Board members include the, Georgia Department of Human Services Division of Aging Services, Navient Health, The Georgia Community Health Worker Coalition, Phoebe Putney Memorial Health System, as well as other representatives of community-based organizations and neighborhoods.
Research on rural community health priorities from the perspective of community members has not been widely conducted in the state of Georgia. Chen et al. (2020) conducted a qualitative study on the health priorities of a small sample of lymphoma survivors in rural Georgia utilizing semi-structured phone interviews. In this study, patients were frustrated by the difficulty of finding opportunities to participate in research and wanting to have more information and more reliable information on their lymphoma etiology and clinical care. Aside from this study, the data on rural community health priorities from the perspective of community members outside of Metropolitan Atlanta are sparse.
To address this lack of data and to establish a community-driven data-based approach to program implementation, the Georgia CTSA CE Program developed the CEFS. The assessment was designed to identify community engaged research interests, needs and experiences across the state of Georgia. The aim of this study was to detail the community-engaged processes and outcomes associated with the CEFS towards identifying the community-engaged health priorities of respondents residing outside of Metropolitan Atlanta.