National Community Advisory Board
In consultation with several national and local community organizations, the project assembled a national Community Advisory Board (CAB) of 12 individuals with experience in representing the HIV communities in scientific and public policy arenas. These people understood and valued the research process, but were simultaneously rooted in the day-to-day lives and urgency of people living with HIV. This group was well qualified and collectively represents the demographic diversity of the epidemic: a majority were HIV-infected persons and least three were women and five were persons of color. The following organizations were contacted to assist and advise the project and nominate representatives to the CAB: National Minority AIDS Council, AIDS Action Council, Black Gay and Lesbian Leadership Forum, National Association of People with AIDS, Bienestar Latino AIDS Project (LA), Project Inform, Gay Men's Health Crisis (NYC), Test Positive Aware Network (Chicago), Sisterlove (Atlanta), and Being Alive (LA and San Diego). Local AIDS service, advocacy and self-help organizations in each project community were invited to nominate representatives to the CAB and to the local advisory networks (see below).
The CAB met frequently during the project. After an extensive orientation, the CAB reviewed the project's plans pinpointed substantive areas that would benefit from more extensive dialogue. Experience has shown that such a process provides richly varied input on a variety of substantive and operational issues, and that consideration of this input facilitates both community cooperation and the ultimate relevance of the data collected. With support of staff, the CAB organized itself to facilitate ongoing collaboration with the project. For example, the CAB chose to assign a liaison to each major working group of the project who received correspondence and participated in their conference calls. Between meetings, the CAB held their own conference calls. Three members were designated by the CAB to sit as full voting members of the Scientific Advisory Committee.
Local Advisory Network
In addition to the national CAB, a network was formed of at least one community liaison representative from each of the study areas. Early on, the local collaborators were asked to present the project for discussion and endorsement to any existing HIV community advisory boards at their home or other participating institutions. These boards, albeit spottily distributed and of varying levels of activity, were a major source for recruitment of local liaison representatives. These representatives (who may also be members of the CAB) were the direct face of the project to local community organizations and key individuals, helping facilitate recruitment and retention of participants and helping the project staff stay apprised of pertinent local issues. This provided an opportunity to present the study plans in detail while there was still an opportunity for revision and refinement and to work with the group to optimize procedures for their particular communities. Representatives were encouraged to refer any detected problems or disagreements with any aspect of the project to the CAB for speedy resolution.
The HIV community and its representatives are of course eager that information relevant to improving their lives be made available as soon as is feasible. We continue to believe that it is our duty to meet this need as fully as possible, subject to whatever limitations are provided in the agreement or are necessary to protect the integrity of the research design and confidentiality procedures. Information sharing includes reports of data analyses being made available through community publications, annual or semiannual regional public meetings for review of the progress and status of the project, or presentations at appropriate regional or national meetings of AIDS community groups.