Community-Based HIV Clinical Trials: An Integrated Approach in Underserved, Rural, Minority Communities

Abstract

Community-Based HIV Clinical Trials:An Integrated Approach in Underserved, Rural, Minority Communities Giselle Corbie-Smith, MD, MSc, Malika Roman Isler, PhD, MPH, Margaret Shandor Miles, PhD, FAAN, RN, and Bahby Banks, MPH What is the Purpose of this study/review? • To explore the perspectives of rural community leaders, service providers, and people living with HIV/AIDS about bringing HIV-related research, including clinical trials, into rural communities. What is the Problem? • Although racial and ethnic minorities have disproportionately high rates of HIV infection, these groups are underrepresented in HIV-related clinical trials. • Participants in HIV/AIDS trials still tend to be overwhelmingly White, of higher socioeconomic status, and from larger urban centers. • The literature to guide engaging rural populations in HIV/AIDS clinical trials is sparse, especially studies involving minority populations. What are the Findings? • All respondents described the need for HIV research and clinical trials to be thought of as one point on a continuum of HIV care and services. • In our analysis, effectively engaging rural minority communities in HIV clinical trials went beyond the logistics of recruitment; research teams were expected to use a comprehensive approach that addresses, in some way, all points along the continuum of HIV care. An integrated approach to research would result in building trust, sharing power, and more effectively addressing the needs and values of the community. Who Should Care Most? • People living with HIV/AIDS • Service providers • Community leaders • Rural minorities • Health organizations and agencies • HIV researchers [End Page 111] • HIV researchers should partner with other local organizations and agencies to offer comprehensive health-related services, including HIV clinical trials, as a way to conduct both HIV and non-HIV research and health outreach. • HIV researchers need to partner with existing services, organizations, and structures in the community to build trust and more effectively address the needs of a given community. • Comprehensive and deliberate attention to integrating HIV clinical trials with other HIV and non-HIV-related health efforts is thought to be important to leverage financial and nonfinancial research resources for supporting the HIV care and services continuum. • Integrating HIV clinical trials with existing services is a way to gain a more comprehensive understanding of the structure and values of a community. • Community members should be considered partners in research to engage the community in the importance and need for research. [End Page 112] Giselle Corbie-Smith Departments of Social Medicine, Medicine, and Epidemiology, The University of North Carolina at Chapel Hill Program on Health Disparities, Cecil G. Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill North Carolina TraCS Institute - Community Engagement Core, The University of North Carolina at Chapel Hill Malika Roman Isler North Carolina TraCS Institute - Community Engagement Core, The University of North Carolina at Chapel Hill Margaret Shandor Miles School of Nursing, The University of North Carolina at Chapel Hill Bahby Banks Program on Health Disparities, Cecil G. Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill Department of Health Behavior and Health Education, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill Copyright © 2012 The Johns Hopkins University Press