Minority recruitment in clinical trials: A conference at Tuskegee, researchers and the community

PURPOSE: This article describes the planning, implementation, and evaluation of a 2 day conference designed to examine the factors related to the participation of African Americans in cancer clinical trials. METHODS: Pre-conference formative evaluations (e.g., focus group discussions and key informant interviews with community Leaders and health providers) were conducted in several rural and urban counties in the state of Alabama to determine African Americans' perceptions of participation in clinical research, The findings from these evaluations were used to develop a conference format and agenda. The 2-day conference included: (i) a pretest of African Americans' perceptions of cancer research, participation factors, and communication and recruitment issues; (ii) individual presentations highlighting community leaders, church leaders, and researchers' perspectives regarding minority participation in research; (iii) working group discussions regarding the barriers and solutions to minority participation in research; and (iv) a posttest evaluation to measure changes in African Americans' perceptions of research. RESULTS: Several recruitment barriers and solutions were identified and reported by the working groups. Comparisons of the pretest and posttest measures showed significant (P > .05) and favorable shifts in the areas of perceptions of cancer research, participation factors, communication issues, and recruitment issues. Participation in the conference reflected a positive change in attitudes on these measures. However, the theme, "barriers that contributed to nonparticipation," did not show any significant changes during the two testing periods. The most critical lesson that resulted from this conference was the need for researchers and community members to have open dialogue about participation in research. CONCLUSIONS: This conference demonstrated that progress can be made when all parties are at the "table" and can be heard. In this model, community members proved to be valuable resources in providing researchers with information that was vital to the success of recruitment and retention studies and trials. (C) 2000 Elsevier Science Inc. All rights reserved.