Promoting health equity in HIV prevention and treatment research: a practical guide to establishing, implementing, and sustaining community advisory boards

Abstract

Over the last 25 years, community-based participatory research (CBPR) has emerged as an innovative methodological approach to break down the barriers toward health equity in biopsychosocial research. Although there are several methods one can use to conduct CBPR research, one widely used established tool that has shown to be effective for engaging community meaningfully in research is community advisory boards (CABs). CABs are formalized collaborative bodies consisting of community and research stakeholders and have been integral in engaging underserved groups experiencing HIV-related health inequities at the early stages of the AIDS crisis. Even though evidence suggests that CABs are an effective tool for conducting high-quality, rigorous, and community-centered HIV-related research, there are minimal guidelines summarizing the steps needed for developing and maintaining a CAB. Therefore, to fill this gap in the literature, this article offers a practical guide to help researchers with minimal experience, particularly graduate students and early-stage investigators, feel more comfortable with establishing a CAB for equity-focused HIV-related research. This article synthesizes already established guidelines and frameworks for CAB development while specifically outlining unique steps related to the three main stages of CAB formation – establishment, implementation, and sustainment. Throughout this article, the authors offer tension points, generated from the literature and with consultation from a CAB working alongside the authors, that researchers and community partners may need to navigate during each of these three stages. In addition, best practices from the literature are identified for each step in the guidelines so that readers can see firsthand how research groups have carried out these steps in their own practice.

Using an Equity in Research Framework to Develop a Community-Engaged Intervention to Improve Preexposure Uptake Among Black Women Living in the United States South

“…Community advisory councils (CAC) are critical infrastructure and mechanisms for community engagement research (DeShields et al, 2020; Halladay et al, 2017; Quinn, 2004). CACs typically consist of representative community members and stakeholders who communicate the community's needs, advise researchers on the intervention's potential success, and participate in intervention design and development (Weinstein et al, 2023). Hallmark signs of an effective CAC are shared power and decision making, reciprocity, and shared ownership of the research process and product (Dickson et al, 2020; Halladay et al, 2017), which can produce a greater effect through community growth, social justice gains, and policy change (Israel et al, 2010; Silvestre et al, 2010), especially for communities facing stigma or discrimination (e.g., racial and ethnic minorities, patients living with HIV; Isler et al, 2015; Pinto et al, 2011; Robillard et al, 2020).…”

Engaging people with lived experiences on community advisory boards in community-based participatory research: a scoping review protocol

“…In CBPR, organisational representatives, community members and researchers all integrate their experiences, contribute to the research process and benefit the community under study 3. One particular goal of CBPR within the healthcare field is to combine knowledge and action for social change to improve community health and mitigate health disparities 4 5…”