Establishment of an urban community advisory board for a clinical trial in Kisumu, Kenya
Community participation is critical for successful HIV research where myths, stigma and misconceptions about HIV abound. Before starting a perinatal clinical trial in Kisumu city, Kenya, we formed a Community Advisory Board (CAB) to provide input on important study issues.
Description: The CAB, established in November 2002, has 9 men and 7 women, aged 20 - 60 years, with education ranging from less than primary school to college graduate. Members were selected through consultation with the local administration, community chiefs and community groups. CAB members represent faith-based, women's, civic, HIV-support organizations, community health workers, village elders, HIV-infected persons, and local administrators. Members are volunteers who meet monthly and receive transport allowance. Issues discussed include study recruitment, partner involvement, disclosure, drug adherence, breastfeeding practices, nutrition, participant follow-up and community perceptions of the trial.
Lessons learned: In a heterogeneous urban area, establishing a representative CAB is challenging. CAB members need training and education on HIV and research methods to advise optimally. Separating advisory and mobilization roles is important, as members may be more accustomed to mobilizing than advising. Lay persons from the study population may be more effective CAB members than professionals who have limited time and may not represent the study population. Ideally, members can distinguish personal from community attitudes. To minimize potential conflict of interest, CAB members are volunteers, although this may lower member retention rates.
Recommendations: CABs can provide useful guidance on conducting clinical trials in an international setting. Broad representation from the community is needed, and training is required so that members can optimally advise researchers.
Kombo, A O
A O Kombo1, T K Thomas2, S Otieno3, K M DeCock4, J Vulule5, L Slutsker2, P N Amornkul2
1US Centers for Disease Control and Prevention (CDC)/Kenya Medical Research Institute (KEMRI), Kisumu, Kenya; 2US Centers for Disease Control and Prevention (CDC), Kisumu, Kenya; 3Catholic Justice and Peace Commission (CJPC), Kisumu, Kenya; 4US Centers for Disease Control and Prevention (CDC), Nairobi, Kenya; 5Kenya Medical Research Institute (KEMRI), Kisumu, Kenya