The Science of Including Older Ethnic and Racial Group Participants in Health-Related Research

Abstract

Advances in scientific knowledge must begin to address the significant health disparities that persist among ethnic and racial minority groups in the United States (Pinn, 2000; Ruffin, 2000). Exceedingly low participation rates of older ethnic minorities and women in health research have been well documented (Gavaghan, 1995). Policies encouraging involvement of underrepresented groups in health research have been in place at the National Institutes of Health (NIH) since the mid 1980s (Roth, Pinn, Hartmuller, Bates, & Fanning, 2000), and, in 1994, NIH issued Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research mandating such inclusion. The NIH, and the Office of Research on Women’s Health (ORWH) in particular, have stressed the importance of recruiting women as research volunteers, especially those from diverse cultures and minority populations (Becker et al., 1992; NIH, ORWH, 1997). Policy and research efforts such as the Women’s Health Initiative are anticipated to address past discrepancies in many scientific areas (Hall, 1999). A recent Government Accounting Office (GAO) evaluation reported that NIH has made significant progress in increasing representation of women in clinical research (GAO, 2000). Nevertheless, the science of recruitment and retention of ethnic minorities is in its early stages, with models only recently being developed and evaluated (Ory, Lipman, Barr, Harden, & Stahl, 2000; Swanson & Ward, 1995). Although there are a few practical guides to assist investigators (for example, LaRosa, Seto, Caban, & Hayunga, 1995; NIH, ORWH, 1994), current information about effective approaches is quite limited. Barriers and facilitators to research participation among ethnic minorities of all ages are just beginning to be examined, with much of the literature focusing on cancer prevention (Giuliano et al., 2000; Underwood, 2000). Research on older adults has primarily addressed recruitment and retention in clinical trials for cancer (Moinpour et al., 2000; Zhu et al., 2000), osteoporosis (Unson, Dunbar, Curry, Kenyon, & Prestwood, 2001), Alzheimer’s disease (Gauthier & Clarke, 1999), mental health services (Arean & Gallagher-Thompson, 1996) and primary prevention studies such as dietary interventions and exercise trials (Coleman et al., 1997; Dennis & Neese, 2000; Lewis et al., 1998; Prohaska, Walcott-McQuigg, & Peters, 2000). Several themes emerge from this growing body of literature: (a) trust and connection with the community is central, (b) involvement of ethnic and racial minority researchers at all levels (lead investigator to data collector) is essential, and (c) barriers to recruitment can stem from research institutions as well as the minority community of interest (Levkoff, Levy, & Weitzmann, 2000). Despite recent progress, the need persists for development of theory-based, population-specific models of recruitment and retention, coupled with systematic evaluation of impact and cost-effectiveness (Ory et al., 2000). Against this backdrop, the National Institute on Aging (NIA) sponsored a preconference to The Gerontological Society of America’s 1999 Annual meeting, ‘‘Involving Older Ethnic Minorities in Health-Related Research.’’ The workshop faculty examined recruitment and retention of research Address correspondence to Leslie Curry, Braceland Center for Mental Health and Aging, The Institute of Living, Hartford Hospital Mental Health Network, 200 Retreat Avenue, Hartford, CT 06106. Email: lcurry@harthosp.org Braceland Center for Mental Health and Aging and University of Connecticut School of Medicine, Hartford. Institute for Social Research, University of Michigan, Ann Arbor.