Although community advisory boards (CABs) are widely used in clinical research, there is limited data regarding their composition and structure, especially in Africa. Our research provides the first qualitative study of the membership practices, selection methods, and qualifications of the six major HIV research centers that comprise the Ugandan National CAB Network (UNCN). Researchers conducted interviews (n = 45) with CAB members and research liaisons at each of the sites. While selection practices and demographics varied between the sites, all six CABs exclusively followed a broad community membership model. Results suggest successful CABs are context dependent and thus distinct guidelines may be needed based on variables including CAB funding level, representation model, and research focus.
AhmedM. B.HarmC. S. (1979). Developing a community board for a mental health center. Hospital & Community Psychiatry, 30, 256-258.
2.
AhnM. J.GrimwoodA.SchwarzwaldH.HermanA. (2003). Ethics and the AIDS pandemic in the developing world. Journal of International Association of Providers of AIDS Care, 2, 81-87.
Biomedical HIV/AIDS Prevention Research Cross-Community Advisory Board (CAB) Network in Uganda: A Charter. (2009, June9). Internal manuscript.
5.
BonnerS.FactorS. H.FoleyM.FreudenbergN.GaleaS.LatkaM. . . VlahovD. (2001). Collaboration among community members, local health service providers, and researchers in an urban research center in Harlem, New York. Public Health Reports, 116, 530-539.
6.
BrielandD. (1971). Community advisory boards and maximum feasible participation. American Journal of Public Health, 61, 292-296.
7.
CampbellM. M.SusserE.de VriesJ.BaldingerA.SibekoG.MndiniM. M.. . . SteinD. J. (2015). Exploring researchers’ experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study. BMC Medical Ethics, 16(1), 45. doi:10.1186/s12910-015-0037-5
8.
CargoM.DelormierT.LévesqueL.Horn-MillerK.McComberA.MacaulayA. C. (2008). Can the democratic ideal of participatory research be achieved? An inside look at an academic-indigenous community partnership. Health Education Research, 23, 904-914. doi:10.1093/her/cym077
ConwayT.HuT.-C.HarringtonT. (1997). Setting health priorities: Community boards accurately reflect the preferences of the community’s residents. Journal of Community Health, 22, 57-68.
11.
CoxL.RouffJ. R.SvendsenK. H.MarkowitzM.AbramsD. I. (1998). Community advisory boards: Their role in AIDS clinical trials. Health & Social Work, 23, 290-297.
12.
DelaneyE. M.WaltonH. M.TrezzaG. R.HenleyK. M.VielhauerM. J.MorganE.. . . KeaneT. M. (2012). Community advisory boards in HIV research: Current scientific status and future directions. Journal of Acquired Immune Deficiency Syndromes, 59, e78-e81. doi:10.1097/QAI.0b013e31824acdfb
13.
HarringtonM. T. M. (2009). Community involvement in HIV and tuberculosis research. Journal of Acquired Immune Deficiency Syndromes, 52, S63-S66.
14.
HladikW.BarkerJ.SsenkusuJ. M.OpioA.TapperoJ. W.HakimA.SerwaddaD. (2012). HIV infection among men who have sex with men in Kampala, Uganda—a respondent driven sampling survey. PLoS ONE, 7(5), e38143. doi:10.1371/journal.pone.0038143
JohnsonP. (2015). Making unjust law: The Parliament of Uganda and the Anti-Homosexuality Act 2014. Parliamentary Affairs, 68, 709-736. doi:10.1093/pa/gsu021
KiwanukaN.MpendoJ.NalutaayaA.WambuziM.NanvubyaA.KitandweP. K.. . . SsetaalaA. (2014). An assessment of fishing communities around Lake Victoria, Uganda, as potential populations for future HIV vaccine efficacy studies: An observational cohort study. BMC Public Health, 14(1), 986. doi:10.1186/1471-2458-14-986
20.
KonéA. A.SullibanM.SenturiaK. D.ChrismanN. J.CiskeS. J.KriegerJ. W. (2000). Improving collaboration between researchers and communities. Public Health Reports, 115, 243-248.
21.
LoB.BayerR. (2003). Establishing ethical trials for treatment and prevention of AIDS in developing countries. BMJ: British Medical Journal, 327(7410), 337-339. doi:10.1136/bmj.327.7410.337
22.
LwinK. M.CheahP. Y.CheahP. K.WhiteN. J.DayN. P.NostenF.ParkerM. (2014). Motivations and perceptions of community advisory boards in the ethics of medical research: The case of the Thai-Myanmar border. BMC Medical Ethics, 15(1), 12.
23.
MacQueenK. M.McLellanE.MetzgerD. S.KegelesS.StraussR. P.ScottiR. . . TrotterR. T. (2001). What is community? An evidence-based definition for participatory public health. American Journal of Public Health, 91, 1929-1938.
24.
Manda-TaylorL. (2014). Establishing community advisory boards for clinical trial research in Malawi: Engendering ethical conduct in research. Malawi Medical Journal, 25, 96-100.
MorinS. F.MaioranaA.KoesterK. A.SheonN. M.RichardsT. A. (2003). Community consultation in HIV prevention research: A study of community advisory boards at 6 research sites. Journal of Acquired Immune Deficiency Syndromes, 33, 513-520.
27.
MwingaA.MoodleyK. (2015). Engaging with Community Advisory Boards (CABs) in Lusaka Zambia: Perspectives from the research team and CAB members. BMC Medical Ethics, 16(1), 39. doi:10.1186/s12910-015-0031-y
28.
NewmanS. D.AndrewsJ. O.MagwoodG. S.JenkinsC.CoxM. J.WilliamsonD. C. (2011). Community advisory boards in community-based participatory research: A synthesis of best processes. Preventing Chronic Disease, 8, A70.
29.
NtshangaS. P.NgcoboP. S.MabasoM. L. H. (2010). Establishment of a Community Advisory Board (CAB) for tuberculosis control and research in the Inanda, Ntuzuma and KwaMashu (INK) area of KwaZulu-Natal, South Africa. Health Policy, 95, 211-215. doi:10.1016/j.healthpol.2009.12.004
30.
PettiforA.RosenbergN.BehetsF. (2011). The need to focus on sex workers in generalized HIV epidemic settings. Sexually Transmitted Diseases, 38, 324-325.
31.
PrattB.LwinK. M.ZionD.NostenF.LoffB.CheahP. Y. (2015). Exploitation and community engagement: Can Community Advisory Boards successfully assume a role minimising exploitation in international research?Developing World Bioethics, 15, 18-26. doi:10.1111/dewb.12031
32.
QuinnS. C. (2004). Protecting human subjects: The role of Community Advisory Boards. American Journal of Public Health, 94, 918-922. doi:10.2105/AJPH.94.6.918
33.
RabinerC. J. (1972). Organizing a community advisory board for a mental health center. Hospital & Community Psychiatry, 23, 118-121.
34.
ReddyP.BuchananD.SifundaS.JamesS.NaidooN. (2010). The role of community advisory boards in health research: Divergent views in the South African experience. Journal of Social Aspects of HIV/AIDS, 7(3), 2-8. doi:10.1080/17290376.2010.9724963
35.
ShubisK.JumaO.SharifuR.BurgessB.AbdullaS. (2009). Challenges of establishing a Community Advisory Board (CAB) in a low-income, low-resource setting: Experiences from Bagamoyo, Tanzania. Health Research Policy and Systems/BioMed Central, 7(1), 16. doi:10.1186/1478-4505-7-16
36.
SigirendaS.BassajjaV.MutenguL. (2008). Networking across Community Advisory Boards (CAB) for HIV prevention research in Uganda. Poster Presentation at the AIDS Vaccine Conference, Cape Town, South Africa. Published in AIDS Research and Human Retroviruses, 24(Suppl. 1), 25.
37.
SilvestreA. J.QuinnS. J.RinaldoC. R. (2010). A twenty-two-year-old community advisory board: Health research as an opportunity for social change. Journal of Community Practice, 18, 58-75. doi:10.1080/10705421003766685
38.
SimonC. M.NewburyE.HeureuxJ. L. (2011). Protecting participants, promoting progress: Public perspectives on community advisory boards (CABs) in biobanking. Journal of Empirical Research on Human Research Ethics, 6(3), 19-30. doi:10.1525/jer.2011.6.3.19
StraussR. P.SenguptaS.QuinnS. C.GoeppingerJ.SpauldingC.KegelesS. M.MillettG. (2001). The role of community advisory boards: Involving communities in the informed consent process. American Journal of Public Health, 91, 1938-1943.
41.
TindanaP.de VriesJ.CampbellM.LittlerK.SeeleyJ.MarshallP.. . . ParkerM. (2015). Community engagement strategies for genomic studies in Africa: A review of the literature. BMC Medical Ethics, 16, 24. doi:10.1186/s12910-015-0014-z
U.S. Department of Health, Education and Welfare. (1979). The Belmont report. Washington, DC: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Retrieved from hhs.gov/ohrp/humansubjects/guidance/belmont.html
WanyenzeR. K.MusinguziG.MatovuJ. K. B.KiguliJ.NuwahaF.MujishaG. . . WagnerG. J. (2016). “If you tell people that you had sex with a fellow man, it is hard to be helped and treated”: Barriers and opportunities for increasing access to HIV services among men who have sex with men in Uganda. PLoS ONE, 11(1), e0147714. doi:10.1371/journal.pone.0147714
