Exploring group dynamics for integrating scientific and experiential knowledge in Community Advisory Boards for HIV research (original) (raw)
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BMC medical research methodology, 2016
Community advisory boards (CAB) are proposed as one mechanism to carry out successful community based participatory research (CBPR), but the presence of CABs may be insufficient to optimize academic-community partnerships. We conducted semi-structured interviews with minority members of a CAB partnered with a HIV/AIDS research center and identified three themes. First, lack of trust in researchers included two subthemes: researchers' lacked respect for community-based organizations' (CBO's) interests and paid inadequate attention to building trust. Second, power imbalance included three subthemes: CAB members felt like inferior "token" members, felt that a lack of communication led to disempowerment, and held preconceived beliefs of researchers that led to perceived power imbalance. Third, CAB members suggested best practices, including using collaborations to build trust, actively allocating power, and sharing tangible research benefits with CBOs. Our findings...
Community Advisory Boards in HIV Research
JAIDS Journal of Acquired Immune Deficiency Syndromes, 2012
Have CAB members receive more training and education about the research process Feedback on publications and dissemination of results
SAGE Research Methods Cases, 2020
Community advisory committees (CACs) are frequently used in research as one way to obtain feedback from community members (e.g., patients, caregivers, health advocates) on research design, analysis, and dissemination. However, CACs may not always be designed in ways that are accessible for communities experiencing the intersections of complex health issues, institutionalized stigma, and marginalization. In this case study, we share our experiences and reflections designing and facilitating a flexible and activity-based CAC model for people living with HIV who use drugs. This model was designed to consult this community on for a study about the acute care hospital stays of people living with HIV who use drugs, as part of a larger program of research conducted in partnership with Casey House, a subacute hospital for people living with HIV.
A 22-Year-Old Community Advisory Board: Health Research as an Opportunity for Social Change
Journal of Community Practice, 2010
Conducting health research often requires a partnership between marginalized communities and researchers. Community organizers can broker this partnership in a way that not only produces important scientific discoveries but also brings needed resources to the communities. This article is a description of a community advisory board established in 1984 to advise researchers on a longitudinal study of the natural history of AIDS among gay men. The Board successfully guided the recruitment of more than 3,000 gay and bisexual male volunteers and, at the same time worked as a powerful change agent. An analysis of minutes from all Board meetings between indicates that significant social change as well as important research findings resulted from Board actions. Community organizers who work to create a mutually beneficial partnership between communities and researchers may find new opportunities to support community growth and social justice.
Qualitative Health Research, 2018
Recently, scholars have begun to critically interrogate the way community participation functions discursively within community-based participatory research (CBPR) and raise questions about its function and limits. Community advisory committees (CACs) are often used within CBPR as one way to involve community members in research from design to dissemination. However, CACs may not always be designed in ways that are accessible for communities experiencing the intersections of complex health issues and marginalization. This article draws on our experience designing and facilitating Research Rec’—a flexible, and activity-based CAC for a project about the acute-care hospital stays of people living with HIV who use drugs. Using Research Rec’ as a case study, we reflect on ethical, methodological, and pedagogical considerations for designing and facilitating CACs for this community. We discuss how to critically reflect on the design and facilitation of advisory committees, and community engagement processes in CBPR more broadly.
Although community advisory boards (CABs) are widely used in clinical research, there is limited data regarding their composition and structure, especially in Africa. Our research provides the first qualitative study of the membership practices, selection methods, and qualifications of the six major HIV research centers that comprise the Ugandan National CAB Network (UNCN). Researchers conducted interviews (n = 45) with CAB members and research liaisons at each of the sites. While selection practices and demographics varied between the sites, all six CABs exclusively followed a broad community membership model. Results suggest successful CABs are context dependent and thus distinct guidelines may be needed based on variables including CAB funding level, representation model, and research focus.
Implementation Science, 2011
Background Community-based organizations (CBOs) are important stakeholders in health systems and are increasingly called upon to use research evidence to inform their advocacy, program planning, and service delivery. To better support CBOs to find and use research evidence, we sought to assess the capacity of CBOs in the HIV/AIDS sector to acquire, assess, adapt, and apply research evidence in their work. Methods We invited executive directors of HIV/AIDS CBOs in Ontario, Canada (n = 51) to complete the Canadian Health Services Research Foundation's "Is Research Working for You?" survey. Findings Based on responses from 25 organizations that collectively provide services to approximately 32,000 clients per year with 290 full-time equivalent staff, we found organizational capacity to acquire, assess, adapt, and apply research evidence to be low. CBO strengths include supporting a culture that rewards flexibility and quality improvement, exchanging information within their organization, and ensuring that their decision-making processes have a place for research. However, CBO Executive Directors indicated that they lacked the skills, time, resources, incentives, and links with experts to acquire research, assess its quality and reliability, and summarize it in a user-friendly way. Conclusion Given the limited capacity to find and use research evidence, we recommend a capacity-building strategy for HIV/AIDS CBOs that focuses on providing the tools, resources, and skills needed to more consistently acquire, assess, adapt, and apply research evidence. Such a strategy may be appropriate in other sectors and jurisdictions as well given that CBO Executive Directors in the HIV/AIDS sector in Ontario report low capacity despite being in the enviable position of having stable government infrastructure in place to support them, benefiting from long-standing investment in capacity building, and being part of an active provincial network. CBOs in other sectors and jurisdictions that have fewer supports may have comparable or lower capacity. Future research should examine a larger sample of CBO Executive Directors from a range of sectors and jurisdictions.
Community-Based Participatory Research & HIV Annotated Bibliography 1 2/22/23
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 highquality, 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.