Building a Registry of Research Volunteers Among Older Urban African Americans: Recruitment Processes and Outcomes From a Community-Based Partnership

Despite significant medical advancements that have yielded improvements in health and longevity of older American adults, older African Americans remain relatively disadvantaged in overall health status in comparison with the U.S. general population (Rooks & Whitfield, 2004). To address disparities in the health status of older minority adults, federally defined as underrepresented groups (e.g., African Americans/Blacks, Latinos/Hispanics, and Native Americans/American Indians), the U.S. Department of Health and Human Services (HHS) through its Healthy People 2010 initiative called upon researchers to develop innovative recruitment strategies for increasing participation of minority persons in health activities and research (U.S. Department of HHS, 2000). Implicit in this call was the notion that the potential benefits of increased participation in health activities and research may enhance the health and well-being of older minority adults. Greater minority research participation may also lead to effective and culturally appropriate health interventions (Brown & Topcu, 2003) as well as promote generalizability of research findings to specific minority populations (Napoles-Springer et al., 2000; Yancey, Ortega, & Kumanyika, 2006). Although progress has been made in recruiting older minority adults into health research (see Arean, Alvidrez, Nery, Estes, & Linkins, 2003; Burns, Soward, Skelly, Leeman, & Carlson, 2008; Curry & Jackson, 2003; Dennis & Neese, 2000; Reed, Foley, Hatch, & Mutran, 2003), researchers continue to face challenges that limit representation of older minority adults in health research (Bartlett et al., 2003; Heiat, Gross, & Krumholz, 2002). Common recruitment challenges include older minority adults’ fear, distrust, and suspicion of research (Freimuth et al., 2001; Napoles-Springer et al., 2000; Sinclair et al., 2000) as well as feelings of inadequate information and lack of perceived benefits from participation in research (Napoles-Springer et al., 2000). Other common challenges include high recruitment costs in time and money as well as unmet personnel needs in recruitment efforts (Tarlow & Mahoney, 2000), issues concerning participants’ confidentiality, and issues concerning participants feeling exploited solely for recruitment purposes (Reed et al., 2003). A more recent study addressing biomarkers identified unique recruitment challenges involving African Americans, such as participants’ concerns about donating blood samples (Taylor, 2009). Despite persistent challenges in recruiting older minority adults in research, researchers have also identified successful recruitment strategies for enhancing older minority adults’ participation in health research. In the current study, we describe two promising recruitment strategies for involving older minority adults in health research through health educational community outreach. These strategies include developing a community-based partnership and building a research volunteer registry for future health research. Regarding prior relevant literature on building community partnerships with minority communities that lead to successful recruitment strategies, Reed and colleagues (2003) found that a collaborative relationship between academic researchers and local institutions as well as involving African Americans in decision-making roles enhanced older African Americans’ participation in health research. For instance, they were successful in recruiting older African Americans in the Durham Elders Project through working with local churches and involving African Americans on a community research advisory board. Similarly, in a study of African American rural women with type 2 diabetes, Burns and colleagues (2008) found that working with community members (e.g., church leaders and an advisory board of African American women with diabetes or knowledge of it) and having research team members participate in community activities were effective strategies in gaining the women's participation. Literature further documents health registries as a valuable resource that can be used to enhance recruitment of underrepresented groups in health research. Studies report the usefulness of health registries for involving underrepresented groups in cancer research (Beskow, Sandler, & Weinberger, 2006; Bowen, Vu, & Kasten-Sportes, 2008; Skinner et al., 2008), particularly women (Sugarman, Regan, Parker, Bluman, & Schildkraut, 1999). Regarding the recruitment of older African Americans in health research, registries have been shown to facilitate their recruitment in clinical health trials (Ford, Havstad, & Davis, 2004), in genetic research (Taylor, 2009), and also in Alzheimer's disease research (Durant, Legedza, Marcantonio, Freeman, & Landon, 2011; Mody et al., 2008). Furthermore, a study found that using health registries was more effective for recruiting older African American women into genetic research than using churches or advertisement (Taylor, 2009). In sum, prior studies on community partnerships and health registries offer insights into strategies for enhancing recruitment of older minority persons in health research. However, particularly for studies on cancer registries, successful recruitment strategies in building a health registry from a patient population may not generalize to the current study that aimed to build a research volunteer registry from a general population of older urban African Americans. Issues of generalizability, such as this one, provided justification for conducting the present study.