(Circulation. 1995;92:279-280.)
© 1995 American Heart Association, Inc.
Articles |
Enhancing Minority Participation in Research
The NHLBI Experience
From the National Heart, Lung, and Blood Institute, Bethesda, Md.
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Introduction |
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 Top Introduction |
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The National Heart, Lung, and Blood Institute (NHLBI) has long been committed to improving the health and well-being of minority populations and has worked aggressively to address the disparities that exist in minority health, education, and research and training opportunities. The NHLBI minority programs have had considerable visibility and remarkable effectiveness, and we would like to share what we believe are some of the elements of our formula for success.
In the early 1970s, the Institute formed an Ad Hoc Committee on Minority Populations to ensure that minority communities were included in the programs and activities planned by the newly established National High Blood Pressure Education Program. The Committee has helped to focus the Institute on minority health issues. Through the years, the responsibilities of the 15-member multiethnic, multidisciplinary committee have evolved so that they now comprise (1) advising the Institute on needs and gaps in our research, training, and education programs with regard to minority interest and representation; (2) serving on various NHLBI working groups and committees to ensure minority representation and participation in these activities; and (3) planning a minority forum that is held every 5 years.
One of the first projects initiated by the Committee was a study titled "Development of Diffusion Strategies Among Culturally Diverse Populations." Completed in the late 1970s, it sought to identify effective strategies for disseminating health information in minority communities. The model developed was designed to promote collaboration and cooperation among the individuals and organizations that can be involved in an outreach or education effort.
A nine-step process was identified as basic to any diffusion effort, though each step may not always be necessary. The steps are to (1) establish a working group of opinion leaders to be actively involved in diffusion efforts; (2) recognize the problem and seek help; (3) assess the community; (4) determine measurable goals; (5) plan diffusion activities; (6) prepare communication tools; (7) conduct a pretest of activities and tools; (8) implement and monitor the plan; and (9) assess the final results.
The study found that involvement of the community opinion leaders was the most crucial prerequisite for success. Such individuals should be involved in all stages of program development because they lend credibility and visibility to the effort.
Additionally, any diffusion effort should be directed at health problems that clearly affect the target community and should be designed with an awareness of pertinent risk behaviors. Planners should recognize existing traditional health beliefs and practices, acknowledge their potential benefits, and attempt to work with them rather than against them.
The NHLBI accepted the findings of the diffusion study and began using many of the recommendations to plan its minority programs. This can be illustrated by recent activities in the Stroke Belt, an area of the southeastern United States distinguished by exceptionally high stroke rates, particularly among blacks. Here, we have reached into the communities through local churches, work sites, and athletic events to improve awareness and treatment of high blood pressure.
Our success in this and other endeavors has reinforced the point that we cannot hope to influence people's health-related behavior by issuing pronouncements from Bethesda. We must go to the communities; get to know and appreciate their beliefs, values, attitudes, tastes, and preferences; and enlist the support of respected local or national figures if we are to be successful.
It is clear that effective communication of health education to minority populations requires special approaches. However, even more challenging is recruitment and retention of minorities in research studies. The NHLBI, in concert with the entire National Institutes of Health, is committed to the inclusion of minority participants in all of its human subject–based research programs. We have found that it is possible to overcome many obstacles to achieving that goal by focusing on several key elements at the institutional level and investigator level.
At the institutional level, the following are important.
First, express a clearly articulated policy regarding minority participation in biomedical and behavioral research projects, training grants, educational and outreach programs, and other activities. The NIH policy on the subject was published in the NIH Guide for Grants and Contracts and in the Federal Register.
Second, have key individuals in leadership positions emphasize the organization's commitment to the policy and its implementation in a variety of media. We have communicated the specifics of the policy to NHLBI-supported investigators in several letters, published articles, and presentations at scientific meetings. Other key Institute staff have also discussed the policy in a variety of forums.
Third, interpret the policy and develop guidance to explain to the potential user how the policy is to be implemented and provide suggested strategies for implementation. Also clearly state the consequences of not adhering to the policy. Such a document has been prepared by the NIH for use by investigators.
Fourth, establish clear, objective standards to determine if the policy is addressed by the applicants. These standards must be understood and applied consistently by all individuals involved in the review and administration of applications involving human subjects to determine if the policy has been addressed adequately. At the NHLBI, applications that do not conform to the policy are deferred from consideration by the NHLBI National Advisory Council.
Fifth, impartially and consistently enforce the penalty for not following the policy. If an investigator with a long-term track record with the Institute has not adhered to the policy, the standards must be applied to his or her application and enforced in the same manner as they are applied to the application of a relatively unknown investigator.
At the investigator level, the following are important.
First, involve minority members of the targeted minority community in any research, training, or education program or activity being planned for the community.
Second, become familiar with and try to accommodate the cultural beliefs, practices, and concerns of the minority community in the research design. Respect for cultural beliefs is likely to enhance compliance.
Third, include minorities in development of the recruitment strategies and preparation of recruitment or educational materials to ensure their cultural relevance and appropriateness.
Fourth, incorporate minorities into the research team. The presence of minorities adds to the credibility of the research and helps establish a trusting relationship between the minority community and the researchers.
Fifth, share the research results with the minority community and help them determine how the data may be used to improve their health status.
As Emerson reminds us, "Nothing great was ever achieved without enthusiasm." We at the NHLBI do, indeed, have great enthusiasm for our minority research program. We view our activities with minority populations as far more than a requirement of our public health mission. They are, in fact, an exciting challenge that has produced some of the most rewarding research ever supported by this Institute.
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Footnotes |
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Circulation. 1995;92:279-280.
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