An Examination of Community Members’, Researchers’ and Health Professionals’ Perceptions of Barriers to Minority Participation in Medical Research: An Application of Concept Mapping

OBJECTIVE: Some of the most promising medical treatments are currently being developed and used in clinical trials. In the US, rates of chronic disease among racial/ethnic minorities are disproportionately high. Unfortunately, the rates of minority participation in medical research are low, and the reasons are unclear. This study seeks to contribute to the body of knowledge that is currently available relating to the specific barriers to racial/ethnic minority participation in medical research through the conceptualization and measurement of these barriers. DESIGN: Study participants included a convenience sample obtained from the National Cancer Institute's Special Populations Networks, and consisted of practitioners, researchers and community members who specialize in research related to the treatment and prevention of cancer. A structured form of concept mapping (Trochim 1989) was the methodology used in this study. The concept mapping process has three specific phases: (1) project planning - development of project focus statements and sample selection (2) idea generation and structuring and (3) analysis and interpretation. This method is analogous to a more formalized and structured focus group approach, and involved the gathering of 149 ideas and the sorting of 70 statements. Comparisons across participant demographics were conducted and are presented in the form of pattern matches. RESULTS: The findings of this study suggest that there are two specific areas where barriers to minority participation may be addressed. The first area is the research system, specifically, the manner in which research studies are designed and implemented, including referral, recruitment and retention of racial/ethnic minorities. The data suggest that recruitment and retention will be aided by addressing patient concerns regarding the research process, and assuaging fears about clinical trials. The second area pertains to minority perceptions of the research process based on history and personal experiences. CONCLUSION: There appears to be a difference in the barriers to participation as defined by community members themselves, and health professionals' perceptions of these barriers. Increased inclusion of minorities in the design, management, and implementation of medical research studies would help mitigate negative perceptions of the research process, and serve to increase participation among racial/ethnic minorities.