A Global Community Advisory Board (GCAB) to enhance clinical research studies in the AIDS Malignancy Consortium (AMC)

Background

The AMC mission is to investigate new treatment and prevention interventions for malignancies in people living with HIV and to study the pathobiology of these tumors in the context of clinical trials. An AMC Global CAB (GCAB) aims to engage affected communities in cancer research and advise AMC leadership on the cancer clinical research needs of these communities. Community input has proven invaluable as the AMC further extends their research efforts in Sub-Saharan Africa (SSA) and Latin America (LATAM) with the creation of a GCAB. Our goal is to provide a forum for Community Representatives (CReps) from the USA, SSA, and LATAM to address community-related issues that could impact uptake of AMC protocols in their local communities and facilitate or hinder clinical trial enrollment.

Methods

A 2-day meeting was held to discuss community representation from the areas where AMC clinical sites are located. The AMC structure and the epidemiology of HIV-associated malignancies were reviewed. CAB members shared common and unique factors that could impact participation in clinical trials, such as access to health care, health insurance, transportation, and cultural factors. CAB members also provided feedback regarding their responsibilities with protocol development, the creation of outreach materials, and how to provide input into informed consent documents.

Results

Community efforts provided a framework for GCAB outreach activities. Initial discussions on how best to support individual CABs were also reviewed including computer and telephone access to the AMC conference calls. We reviewed challenges of convening meetings where different time zone issues impacted GCAB availability. We decided to have a once a quarter combined GCAB call and the remaining monthly CAB calls meet regionally. Members were able to learn best practices for outreach activities which they are now implementing in their different sites. The CReps assisted with the development of outreach study materials and the review of informed consent forms.

Conclusions

The forum provided an important platform for GCAB members to integrate awareness of AMC clinical trials and participation in clinical research among people living with HIV and cancer. The SSA, LATAM, and USA CABs are focused on providing a necessary platform for mentoring, information dissemination, education, and sharing of best practices for the AMC