About the CAB

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.

Mission

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:

• Build partnerships and trust among all stakeholders
• Develop materials to support local sites on community engagement, education, and outreach
• Increase the likelihood that affected communities are invested in and supportive of the research being done
• Contribute to the acceptability and use of the intervention (HIV cure strategies)

Guiding Principles

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:

• Among stakeholders
• For human rights and for confidentiality of trial participants
• For local values, cultures and perspectives
• For the scientific process

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.”

• “Socio-cultural competency includes understanding the norms, practices, and beliefs of relevant cultures, and local circumstances, as well as diverse community stakeholder perspectives, priorities, and research needs.”
• “Research competency includes understanding the scientific process of defining research questions, developing appropriate trial designs, and collecting, analyzing, and disseminating (sharing) data to ensure valid results.”

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:

• “Trial funders, sponsors, and implementers are accountable to the society as large for conducting scientifically valid and ethical research.”
• “Community stakeholders and other relevant stakeholders are accountable for ensuring their input into the research process is fair and constructive, respects the scientific process, and is in the best self-identified interests of community stakeholders.”

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.”