Strategies for Increasing Minority Patient Participation in Clinical Research Programs in the United States
Creators: name: Leavy, Michelle
Publisher: name: The University of North Carolina at Chapel Hill University Libraries
Year: 2010

description: Cardiovascular disease (CVD) is the leading cause of death in minority populations in the United States, yet minority patients tend to be under-represented in cardiovascular disease research. The under-representation of minorities in clinical research raises two major issues. First, low minority participation levels mean that study findings are not applicable or able to be generalized to minority patients. Second, social justice and research ethics require that the benefits and burdens of clinical research be shared equally among the potential beneficiaries of the research; by not participating in research, minority patients may not benefit from access to new treatments or prevention programs. Many studies have identified barriers to minority patient participation in clinical research, including distrust of medical researchers and fear of harm; lack of knowledge; lack of transportation; interference with work or family responsibilities; burden of participation; financial costs; language or literacy issues; and restrictive study designs. Much has been written about strategies for overcoming these barriers and increasing minority patient participation in cancer and HIV/AIDS research. This paper examines potential strategies for increasing minority patient participation in cardiovascular disease research. Specifically, this paper addresses five questions: What strategies have been documented for increasing the participation of minority patients in cardiovascular disease research in the United States? What strategies have been documented for increasing the participation of minority patients in research in other disease areas or in clinical research generally (e.g., not in a specific disease area)? Are these strategies adaptable for cardiovascular disease? Has the effectiveness (and possibly relevant effectiveness) of the strategies been assessed? Are there opportunities for collaboration between the clinical research and public health sectors to implement new strategies and/or to implement existing strategies more efficiently? The primary source of information for this paper was a literature review. The literature review identified few strategies specifically designed to increase minority participation in CVD research. Strategies designed for other disease areas or for clinical research generally may be adapted for CVD research, but assessments of the effectiveness of these strategies are necessary before they are widely implemented. Few assessments of strategy effectiveness are available for any disease area. New research should be conducted to develop and test effective strategies for CVD research. New strategies and approaches are needed at both the individual study level and the broader systems level. Addressing the issue from a public health leadership standpoint may be particularly useful for developing new systems level strategies. Researchers should also investigate the potential for partnerships with public health organizations that are already investing in education, prevention, and treatment campaigns for CVD.