Community Advisory Boards in HIV Research

To the Editors: Researchers conduct studies with the assumption they are addressing the needs of the target population. Yet, investigators do not always receive direct input from those affected by the issue of interest. To fill this gap, there has been a shift to include the perspectives of those who receive or have the potential to receive services rather than decisions being made solely by researchers.1 Community Based Participatory Research (CBPR) encourages inclusion of the targeted population to promote their integration in research and social action.1 Within CBPR, researchers are not expected to sacrifice scientific rigor but to share responsibility with the community for whom the research is designed to help.1 Goals of CBPR include the following: (1) encouraging trust between researchers and communities; (2) increasing quantity and quality of data; (3) developing new research questions; and (4) translating research into action. Creating community advisory boards (CABs) is one way of supporting CBPR.2 CABs allow community members to participate in research at multiple levels, enhancing the clinical relevance of studies by leveraging the personal experiences of individuals affected by the target problem(s).3 COMMUNITY ADVISORY BOARDS IN HIV-RELATED HEALTH CARE RESEARCH The National Institutes of Health (NIH) required CABs in HIV-related research for the first time within the Community Programs for Clinical Research on AIDS (CPCRA) initiative.4 The goal of the CPCRA initiative was to increase the accessibility of HIV clinical trials to underserved populations in the United States (eg, women, ethnic minorities, and injection drug users). Despite mandated utilization of CABs, little systematic research has examined their influence on the research process. Empirical investigation of CABs is warranted to ensure that community involvement improves the quality of research and that involvement benefits those individuals participating on a CAB. Therefore, the primary aim of the current article is to promote the empirical investigation of CABs by: (1) describing CABs and their roles; (2) reviewing CAB research; (3) identifying a CAB that we believe is a testable model; and (4) providing recommendations for how to systematically assess the impact of CABs on the research process. CABS AND THEIR ROLES IN RESEARCH Different models exist for including CABs in the research process. One important aspect is the CAB's level of participation. A community-directed model is one in which there is strong community leadership within the research process although a research/academic-directed model is one in which researchers have most of the decision-making responsibilities.5 Another characteristic of CABs is whether or not researchers use a specific theoretical framework. For example, in one study, the role of the CAB was woven within the Institutional Theory, which focused on how a specific organization impacts the broader social environment.6 Other investigators have seemed to use more of a best-fit framework, in which they developed their own procedures and goals that they believed were most appropriate for the research.7,8 Member composition is another important aspect. CABs may be newly formed groups or they can be an existing group with a history of action promotion.2 Also, “broad community” and “population-specific” models are different approaches when creating CABs.9 The “broad community” model may include those affected by the target problems, patient advocates, and/or community leaders (eg, educator and religious leaders). Alternatively, the “population-specific” model includes only those who have HIV or at higher risk for HIV infection (eg, African Americans, women, or injection drug users). There is an array of identified roles for CABs. Roles include increasing the congruency between the community's needs and the goals of research programs,10 recruiting peers to participate in research projects, and helping disseminate research findings to the overall community.3 Other functions of CABs are using community members' personal experiences to identify problems and finding solutions to those problems,11 promoting community empowerment,12 and providing input and guidance on program policies and operations.13 CABs have also been involved in the Institutional Review Board process, promoting the protection of rights of participants especially within the informed consent process.7 RESEARCH ON CABS Researchers have provided anecdotal evidence that CABs benefit the research process.4,9 Yet, many authors note the lack of empirically based conclusions about the positive or negative impact of CABs on the research process.10 To begin a dialogue about how to test the impact of CABs on the research process, we identified a viable CAB (ie, Boston Medical Center's CAB, which will be described in the next section) that was deemed successful by both researchers and CAB members. Please note that we are not suggesting that this particular CAB is the gold standard, and we acknowledge that this CAB may not generalize to all subgroups within the HIV population (eg, men who have sex with men, injection drug users). THE HIV/AIDS TREATMENT ADHERENCE, HEALTH OUTCOMES, AND COST STUDY The HIV/AIDS Treatment Adherence, Health Outcomes, and Cost Study was a multisite (ie, 8 clinical sites with a coordinating center) research project funded by a cooperative agreement of agencies: Substance Abuse Mental Health Services Administration, the Health Resources Services Administration, and the National Institutes of Mental Health.14 The overall aim of this study was to investigate the efficacy of mental health and substance abuse treatment on individuals with HIV with comorbid substance abuse and psychiatric diagnoses. Each of the 8 clinical sites had a CAB that used a “broad community model”, consisting of participants, study site personnel, and stakeholders in the community. Roles of the CAB included performing community outreach, attending regular meetings, piloting study measures, recruiting and retaining participants, supporting ongoing participants, and reviewing future grant proposals. To gain further understanding about the experience of having a CAB involved in the research process, both CAB members and research investigators were interviewed after the study was completed. Please see Table 1 for a summary of the benefits and challenges of implementing a CAB.TABLE 1: Benefits, Challenges, and Needed Improvements of the Boston Medical Center CABDIRECTIONS FOR FUTURE RESEARCH CABs were first mandated in the CPCRA initiative to strengthen community representation within clinical trials research.4 However, few empirical studies published to date have examined whether CABs have had a positive impact on the research process. Therefore, an important area to begin studying is if CABs do in fact lead to measurable improvements in research. There are several potential areas to consider when determining if community involvement benefits the research process. Some important questions to consider include whether CABs (1) alter the range or focus of research topics; (2) influence research protocols and/or research questions (making them more relevant to those individuals who are HIV positive); (3) increase recruitment and retention of research study participants; and (4) help to identify and resolve ethical concerns. Also, it is critical to evaluate if CABs could have a detrimental effect on CAB members themselves or on the community. To accomplish this, researchers could survey CAB members before, during, and after their participation to assess various domains of well being and survey community members' views on the research being conducted. The Boston Medical Center CAB (described earlier) provides one of several potential models that can be used in the much-needed empirical evaluations of CABs within HIV-related research. We are not proposing that this is the optimal CAB model, nor the only CAB model; however, it provides a context when discussing how to start testing CABs empirically. One possible way to test the impact of CAB utilization is to identify studies with similar goals as “The HIV/AIDS Treatment Adherence, Health Outcomes, and Cost Study” that did not utilize a CAB and examine if there were significant differences in outcomes (eg, research questions, recruitment and retention of participants, or study findings). Meta-analytic strategies could compare the use of CABs across existing studies and determine if using a CAB positively impacts the research. Another potential methodology for the empirical investigation of CABs is a prospective approach, in which two research teams (ie, one with a CAB and one without a CAB) conduct similar studies, and then the findings are compared on the dimensions of interest. Researchers may also want to include program evaluation methods and qualitative approaches to further understand the impact of CAB usage. Combining quantitative and qualitative measurement from both CAB members and investigators will likely enhance the caliber of the information ultimately obtained, as these two groups may have different perspective and views about CABs. Once benefits to the research process and to community members are empirically established, researchers should continue to collect data on CABs with the goal of developing suggested guidelines for creating, implementing, and disbanding CABs (once the research is completed). To determine key components for a successful CAB, CABs that utilize different approaches, methods, and processes could be compared on various domains (eg, the scope of the research question, participant recruitment and retention, and resolution of ethical concerns). As a whole, if taken up by researchers, empirically testing CABs will go far in increasing the knowledge base about the effective use of communities in the research process.