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The BELIEVE Collaboratory is an NIH-funded effort aimed at conducting scientific research to identify a cure for HIV. The Collaboratory involves researchers from 17 different institutions. However, most of the research will be managed through Weill Cornell Medicine. While much of the research will be conducted in basic science laboratories, ultimately the researchers hope to translate and test their findings in small clinical trials. Engaging and involving the community in all aspects of these studies is critical to the success of the Collaboratory. The community needs to have some understanding of how and why the studies are conducted and, by trusting the way that they are conducted, to provide the support essential to the success of the studies. When, one day in the future, an effective HIV cure is developed, community support will be essential in making the treatment widely and successfully available.
The mission of the BELIEVE Community Advisory Board (CAB) is to provide meaningful and broad community input into the scientific efforts, operations, and activities of the BELIEVE Collaboratory to:
The BELIEVE Community Advisory Board has developed their primary guiding principles based on past research and community feedback. These principles include the following:
Inclusivity: Meaningful engagement and active solicitation of input from stakeholders with an interest in HIV cure
Transparency: Clear CAB by-laws, dissemination to lay as well as scientific communities, clarity in all CAB and research activities, timelines, and outcomes
Breadth: Early and direct input from community members during all phases of the research process
The BELIEVE Community Advisory Board also seeks to apply the guiding principles of good participatory practice (GPP) described by the Joint United Nations Program on HIV/AIDS (UNAIDS) 20111. These principles include the following:
Respect:
Mutual understanding: “A common understanding about objectives and how to achieve them is essential to effective partnerships among stakeholders. This requires stakeholders to develop competency in both socio-cultural issues and research processes.”
Integrity: “Maintaining the highest level of scientific and ethical integrity.”
Transparency: “Open, honest, timely, and clear communications enables transparency and fosters collaborative, trusting, and constructive relationships.”
Accountability:
Community stakeholder autonomy: “The right to support or refuse proposals to conduct research in a particular area, depending on the community stakeholders’ self-identified interests and desires.”