The participation of African Americans in clinical and public health research is essential. However, for a multitude of reasons, participation is low in many research studies. This article reviews the literature that substantiates barriers to participation and the legacy of past abuses of human subjects through research. The article then reports the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, and Atlanta during the winter of 1997. In order to improve recruitment and retention in research, the focus group study examined knowledge of and attitudes toward medical research, knowledge of the Tuskegee Syphilis Study, and reactions to the Home Box Office production, Miss Evers' Boys, a fictionalized version of the Tuskegee Study, that premiered in February, 1997. The study found that accurate knowledge about research was limited; lack of understanding and trust of informed consent procedures was problematic; and distrust of researchers posed a substantial barrier to recruitment. Additionally, the study found that, in general, participants believed that research was important, but they clearly distinguished between types of research they would be willing to consider participating in and their motivations for doing so.
The Centers for Disease Control and Prevention (CDC) implemented the Diffusion of Effective Behavioral Interventions Project to disseminate evidence-based behavioral interventions to community-based HIV prevention providers. Through development of intervention-specific technical assistance guides and provision of face-to-face, telephone, and e-mail technical assistance, a range of capacity-building issues were identified. These issues were linked to a proposed agency capacity model for implementing an evidence-based intervention. The model has six domains: organizational environment, governance, and programmatic infrastructure; workforce and professional development; resources and support; motivational forces and readiness; learning from experience; and adjusting to the external environment. We think this model could be used to implement evidence-based interventions by facilitating the selection of best-prepared agencies and by identifying critical areas of capacity building. The model will help us establish a framework for informing future program announcements and predecisional site visit assessments, and in developing an instrument for assessing agency capacity to implement evidence-based interventions.
Although HIV prevention researchers have conducted numerous controlled outcome studies to evaluate the effectiveness of theory-based interventions aimed at reducing HIV risk behaviors, many HIV risk reduction interventions are conducted not by researchers but by staff in local health departments or community-based organizations (CBOs). Despite their widely recognized role in slowing the spread of HIV, very few attempts have been geared toward understanding the programmatic and organizational characteristics of their HIV prevention efforts. The Centers for Disease Control and Prevention's Characteristics of Reputationally Strong Programs project identified and profiled 18 innovative, community-based, HIV prevention programs viewed by community partners as successful. The aim was to determine common features of the programs that could be widely applied to improve HIV prevention research and programs. Results indicated that several common intervention characteristics and organizational characteristics, including agency support and staff commitment, played significant roles in the success of reputationally strong programs.
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