An Examination of Community Members', Researchers' and Health Professionals' Perceptions of Barriers to Minority Participation in Medical Research

An Application of Concept Mapping

Bibliographic Data

ID5841869
AuthorsJamuir M Robinson (a Division of Cancer Prevention and Office of Education and Special Initiatives , National Cancer Institute, National Institutes of Health), William M K Trochim (0000-0003-0369-2922, b Policy Analysis & Management , Cornell University)
Year2007
Volume12
Issue5
Pages521-539
Publication date2007-11-01
Open AccessNo
TypeARTICLE
VenueEthnicity and Health (JOURNAL)
Journal identifiersISSN: 1355-7858 • E-ISSN: 1465-3419
PublisherTaylor & Francis (PUBLISHER • GB)
DOI10.1080/13557850701616987
PMID17978947
OpenAlexW2076195907
LanguageEN
Citations received25
References cited24

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 Citation1989) 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. This article was supported, in part, by a Cancer Research Training Award from the National Cancer Institute. The views expressed in this manuscript are those of the authors and are not to be considered official views or opinions of the National Cancer Institute. Notes 1. The Special Populations Networks ended their five-year performance period in March 2005. The program has been reorganized and renamed the Community Networks to Reduce Cancer Health Disparities. 2. The Concept System and Concept System Global software are licensed through Concept Systems Incorporated. Ithaca, New York (http://www.conceptsystems.com

Sample (material · Ethics in Clinical Research · Health Policy Implementation Science · Meta-analysis and systematic reviews

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