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

PURPOSE: This article describes the planning, implementation, and evaluatio n of a 2 day conference designed to examine the factors related to the part icipation of African Americans in cancer clinical trials. METHODS: Pre-conference formative evaluations (e.g., focus group discussion s 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 r esearch, The findings from these evaluations were used to develop a confere nce format and agenda. The 2-day conference included: (i) a pretest of Afri can Americans' perceptions of cancer research, participation factors, and c ommunication and recruitment issues; (ii) individual presentations highligh ting community leaders, church leaders, and researchers' perspectives regar ding minority participation in research; (iii) working group discussions re garding the barriers and solutions to minority participation in research; a nd (iv) a posttest evaluation to measure changes in African Americans' perc eptions of research. RESULTS: Several recruitment barriers and solutions were identified and rep orted by the working groups. Comparisons of the pretest and posttest measur es showed significant (P > .05) and favorable shifts in the areas of percep tions of cancer research, participation factors, communication issues, and recruitment issues. Participation in the conference reflected a positive ch ange in attitudes on these measures. However, the theme, "barriers that con tributed to nonparticipation," did not show any significant changes during the two testing periods. The most critical lesson that resulted from this c onference was the need for researchers and community members to have open d ialogue about participation in research. CONCLUSIONS: This conference demonstrated that progress can be made when al l parties are at the "table" and can be heard. In this model, community mem bers proved to be valuable resources in providing researchers with informat ion that was vital to the success of recruitment and retention studies and trials. (C) 2000 Elsevier Science Inc. All rights reserved.