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Across the Miles:
Process and Impacts of Collaboration with a Rural Community Advisory Board in HIV Research
Abstract

Background: Project Education and Access to Services and Testing (EAST) worked with a community advisory board (CAB) to (1) identify individual-level, provider-level, and community-level factors influencing attitudes about human immunodeficiency virus (HIV) and HIV/acquired immuno-deficiency syndrome (AIDS) research and (2) develop and test a community-based HIV clinical trials educational intervention in six rural counties in the Southeast.

Objectives: We describe the processes and impact of forming and collaborating with a rural, multicommunity CAB.

Methods: CAB members included community leaders, providers, and people living with HIV/AIDS (PLWHA). CAB engagement emphasized respect and confidentiality. Tape-recorded meeting minutes and debriefing notes were used in analysis.

Results: The CAB identified physical and social parameters of the communities, built community trust, informed research design and implementation, and helped to navigate the impact of stigma. Major barriers to engagement were distance and geographic dispersion.

Conclusions: CABs can make a critical difference in conducting culturally appropriate and successful research in rural communities.

Keywords

Community-based research, Community advisory boards, rural, South, HIV, AIDS

Community-based research is an important approach to address health disparities with minority communities.1,2 A common model of community-based research involves collaborative community–academic partnerships.3 One particularly important strategy for partnering is through CAB.4 Ideally, CAB participants are representative of community members from diverse backgrounds, including the population of interest for the research, who can give voice to the concerns and needs of the community.5 CABs can facilitate community input in the research process6 by offering constructive feedback on data collection methods,3,7 developing effective recruitment and retention strategies,3 identifying and helping to mitigate the social risks/harms of research,8 and helping community members to understand the risks and benefits of research participation.3,5,9

CAB members help to define the community and offer researchers an insider’s perspective of the various social and environmental influences on health, as well as culturally appropriate ways to take these issues into account in the research.2,811 CABs can help researchers to establish trust with the community3,6,9,12 and serve as a source of accountability for all partners involved in the process and products [End Page 41] that emerge from community-based research. Giving voice, representation, and validity to community concerns and interests through a CAB is particularly important for historically marginalized populations, such as racial and ethnic minorities and those who reside in poor or rural communities.5,6,9,10,13

Over the past two decades, CABs have been encouraged or even required for federally funded clinical trials, and are now standard practice for research worldwide, particularly for vaccine and drug trials and community-based research.3,14,15 The function of CABs has expanded from an advisory capacity into more of a collaborative process between researchers and community members.2,3,8,9 In an advisory capacity, CABs serve as consultants, providing feedback during various phases of a project.16 However, as CABs become more collaborative, there is a reciprocal flow of information and community members have increased accountability and power over research outcomes.17

Much of the literature about working with CABs has evolved from urban studies.2,3,18,19 Although there is literature about working with CABs in rural areas of low-resource countries,3,14 less is known about the challenges and successes in forming and working with CABs in rural areas of the United States. Given the continued rise in HIV incidence and prevalence in rural areas, particularly in the Southeastern United States,20,21 and the challenges of rural residents in participating in clinical research,22,23 there is a need for more locally informed HIV clinical research in rural communities. Rural research is particularly challenging owing to the cultural differences and geographic distances from HIV care centers and academic researchers,23 the broad geographic spread, and stigma.2427

OBJECTIVES

Project EAST focused on identifying individual-, provider-, and community-level factors influencing views about HIV and HIV/AIDS research, and then developed and tested a community-based HIV clinical trials intervention for service and health care providers and PLWHA.28 Project EAST was situated in six rural counties in the southeast, selected because of the high rate of HIV among racial and ethnic minorities. These counties also have high rates of poverty, low educational attainment, and high levels of unemployment.29 Herein, we have described the processes and impact of forming and collaborating with a rural, multicommunity CAB.

METHODS

Process of Engagement

Locally based community outreach specialists (COS) facilitated the CAB engagement. Each COS had a longstanding leadership role in local HIV prevention and treatment, experience working with HIV care providers and PLWHA, and previous collaborative partnerships with the research team. To ensure CAB diversity, each COS used a recruitment matrix consisting of a variety of community segments (e.g., grassroots, education, media, political, human services) to nominate potential CAB members, most of whom worked in the field of HIV/AIDS and/or were PLWHA. The COS initially recruited 12 individuals to serve on the CAB. Despite our attempts, we were unable to recruit a PLWHA who had previously participated in an HIV clinical trial. The study team met quarterly with the CAB, at mutually decided on dates, times, and locations. COS oversaw meeting logistics, including carpools and meeting space. Each CAB member received a stipend and mileage reimbursement for meeting attendance, in addition to meals served at each meeting.

A coinvestigator with expertise in working with CABs facilitated all meetings.5,8 Meeting agendas were set based on points raised by CAB members from previous meetings and feedback from the research team. The CAB and researchers decided to obtain institutional review board approval to tape record the CAB sessions to use the meeting deliberations as data in the course of the research. After each CAB meeting, the research team debriefed to highlight process issues or key emergent themes.

Owing to the geographic dispersion of members across the six-county study region and the time between quarterly meetings, the CAB expressed a desire to maintain more frequent communication. As a result, the EAST team implemented quarterly conference calls between in-person meetings, and a newsletter that featured CAB members and provided information about local events, conferences, and intervention updates. The calls were eventually discontinued owing to limited participation.

Analysis

We used data from the tape recordings of CAB meetings and the debriefing notes in analyses. First, we identified key [End Page 42] roles and activities of CAB members throughout the project. Next, we clustered the activities into broader themes, which were informed by the emerging literature on the role of CABs, and considering the rural aspects of the project. During one of our final meetings, CAB members discussed their perspectives on CAB member contributions to Project EAST and what participation in the CAB was like for them. We also took the list of themes to the CAB and asked for their input and/or verification. Two longstanding CAB members reviewed and provided feedback on additional iterations of the themes as well as the content describing each theme; both are coauthors on this manuscript.

RESULTS

On average, approximately 10 members attended each CAB meeting. However, owing to illness and death, changes in positions, and relocation, a total of 41 individuals participated on the CAB. Most CAB members self-identified as Black/African American (68%), and had some college (39%), were male (59%); the mean age was 44 (STD = 10.6; Table 1). CAB members included case managers, peer outreach workers, nonprofit executive directors, clergy, and clinicians from area hospitals. We identified four themes related to forming and collaborating with the CAB: (1) establishing identity and physical and social parameters of the community, (2) building trust and engagement, (3) informing research design and implementation, and (4) navigating the impact of stigma. Table 2 includes a list of key CAB activities and impacts on the project.

Established Identity and Physical and Social Parameters of the Community

A group naming process was critical to establishing community identity for the project,30 hence the CAB named the Project EAST. This process was important to facilitate CAB ownership of the project, acknowledge the geographic parameters of the project, and to respect the views of the CAB members. The name, EAST, intentionally omitted any reference to HIV/AIDS owing to confidentiality issues and pervasive HIV-related stigma present in this rural community.

Table 1. Project EAST CAB Demographic Characteristics
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Table 1.

Project EAST CAB Demographic Characteristics

Through a mapping exercise and photo discussions, individuals identified the physical boundaries of each member’s community, locations for high HIV risk activity, and the [End Page 43] physical and social contexts of those areas that contribute to HIV risk. This exercise provided context for intervention development and solidified the relationship between the CAB and the research team. It also sensitized the research team to the historic and ongoing sociopolitical and economic influences, particularly poverty and geographic isolation, on HIV risk and PLWHA in these rural communities, as well locally generated linguistic cues. For example, Project EAST developed partnerships and agreements about participant recruitment with several key local organizations, which ameliorated tensions from historical competition between organizations for fiscal resources and concerns regarding loss of clientele.

Build Trust and Engagement

The Project EAST CAB assisted in building trust and community engagement by legitimizing the project with community residents and identifying key collaborators who became central to the success of the project, and helped to identify and gain access to key collaborators for the community-based intervention. Furthermore, key CAB members worked diligently to protect the interests of Project EAST in the community when other projects with a similar focus began to compete for the attention of potential intervention participants, community members, and health agencies involved in our project.

Informed Research Design and Implementation

Throughout the project, the CAB informed the investigators about the research design including recruitment strategies, data collection instruments, intervention content and delivery, guiding the team through barriers, and providing input into analyses and dissemination products (e.g., papers, abstracts, posters).

Table 2. CAB Activities and Impact on Project EAST
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Table 2.

CAB Activities and Impact on Project EAST

[End Page 44]

Community Study

The CAB informed the formative research investigating community knowledge and perceptions regarding HIV, HIV clinical trials, and experiences of living with HIV/AIDS in these rural communities. CAB members provided input on the interview and focus group guides and pretested these guides before data collection.24,25,27 CAB input into the guides helped to refine the areas of inquiry, clarify the questions, and increase the relevance and linguistic appropriateness of the guide. Additionally, CAB members guided the research team regarding recruitment and strategies to support research participation. This included introductions to key contacts and agencies, identification of private and easily accessible sites for the focus groups and interviews, and conducting interviews for PLWHA on days they already had clinic appointments to avoid challenges with transportation or time necessary for data collection. As the research team prepared to pilot test the intervention, we encountered major changes in the health care delivery system owing to national and state policy changes and budget cuts. The CAB helped us to understand the implications of these changes for rural agencies and PLWHA and to develop alternative strategies for reaching the minority rural populations of interest.

HIV Clinical Trials Intervention Development

The CAB helped to integrate key findings from the formative research into the intervention design aimed at increasing access to information about HIV clinical trials. One of their most critical contributions was shifting our intervention plan from an individual informational and counseling session with PLWHA to a more comprehensive, multisession intervention to prepare PLWHA broadly about research and clinical trials.28 More important, they pointed out that rural service and health care providers have very limited exposure to HIV clinical trials and need to be educated about HIV clinical trials before PLWHA, so that providers would be prepared to support PLWHA and answer potential questions.

As a result, the research team developed two parallel interventions, one for service and health providers and one for PLWHA. The interventions were staggered to provide training for providers before providing training for PLWHA. The CAB also provided feedback on the intervention content, pretested several of the activities, reviewed the entire curriculum, and provided feedback about wording, length, and content.28 In particular, the CAB viewed an existing video about minority participation in clinical trials, determined that it was inappropriate for their rural context, and recommended we make our own video by interviewing a rural minority who had participated in an HIV clinical trial.

CAB members also took part in an educational video detailing the importance of community leader support of research in rural communities. This video was part of a parallel EAST intervention specifically targeting rural community leaders, and provided an additional platform for CAB members to speak about their personal experiences as HIV prevention and treatment advocates in their communities, as well as their experiences in community-based research. Finally, the CAB also provided insight into the conditions for acceptability of using a mobile unit for community-based clinical trials.27

Dissemination

An often overlooked role for CABs is that of consultation regarding abstracts, posters, and manuscripts. The CAB provided feedback and clarification of findings for all abstracts and papers. For example, they reviewed the conceptual model that evolved from the analyses in one paper and reframed the findings.25 Two CAB members that participated in analyses and reviewed drafts before submission are coauthors on this article.

Navigated the Impact of Stigma

Throughout the project, the CAB helped the research team to understand local attitudes and beliefs of the local community about HIV, and the resultant discrimination and stigma. We worked with the CAB to ensure we were maintaining the privacy and confidentiality of participants with HIV/AIDS in all phases of the study. This need was reinforced as the research team and CAB examined the extensive findings from the focus groups and interviews about the strong prevalence of stigma for PLWHA in these communities.24,25,27 Thus, confidentiality was a strict principle of the study and the issues related to stigma were addressed as the clinical trials educational intervention was developed.

LESSONS LEARNED

CAB members helped Project EAST to identify and understand the parameters of the local rural community, understand how to build trust in a rural community, shape the intervention to be culturally appropriate, and sensitized investigators [End Page 45] to the culture and impact of stigma in rural communities. This sensitization, as well as CAB guidance on effective ways to navigate its impact in Project EAST, was integral to gaining community acceptance of the project, recruiting study participants, and successful intervention implementation in several counties. It is also through the CAB engagement, that Project EAST learned the following lessons regarding HIV research in rural contexts: (1) the unique and enduring role of stigma, (2) the influence of geographic dispersion on rural research engagement, and (3) the need for multilevel community engagement.

Social and clinical care systems within rural communities are characteristically small with overlapping networks.31,32 This level of interconnectedness magnifies the impact of stigma in both clinical care and research. Despite the high incidence of HIV within these communities, CAB members noted limited opportunities and venues to discuss HIV, given the prevalent stigma and social silence associated with HIV in the rural community.25 The insider perspective of the CAB was essential for Project EAST to navigate stigma concerns related to PLWHA participation in the formative research, content, and delivery of the intervention, and creating space for PLWHA to serve on the CAB while maintaining their confidentiality. Of importance, CAB members developed an increased desire and commitment toward reducing HIV stigma in the community. With logistical support from the project staff, three CAB members in one community planned and carried out a stigma reduction intervention consisting of an interactive play performed for community members spanning three counties. The play gained the attention of local media and DVDs were also produced for dissemination. CAB members in the other three-county region planned to develop a mass media campaign, including billboards, radio, and Internet.

The level of geographic dispersion across the study counties presented challenges to transportation to meeting sites and the amount of time required to participate in meetings. Project EAST CAB members included representation across six counties that were contiguous but, nevertheless, the distances across these rural counties was large. To support attendance, we started with meeting in the most central location; however, owing to feelings about historical racial strife in this location, we found a more neutral location. Eventually, the CAB requested that we rotate from the easternmost location to the westernmost location to facilitate a greater sense of cohesion across the communities, and to alternate the geographic distance for travel for both communities; however, this resulted in participation barriers mainly because of time and transportation. Meeting quarterly was based on geographic distance between the university and the communities and budgetary constraints, and the gap in time between meetings resulted in a loss of momentum that may have affected the commitment of some members. Similar geographic challenges within a rural setting inhibited CAB member representation in another study.33 Community engagement is often predicated on ongoing physical presence within a particular community; however, the burden of distance, coupled with resource constraints, necessitated reliance on alternative media to communicate and maintain relationships (i.e., newsletters, conference calls between meetings). However, CAB members stated their appreciation for an opportunity to learn more about the professional and personal endeavors undertaken by their peers through the newsletters. In addition, unlike many urban settings, public transportation options across the widely dispersed rural counties were limited. Having locally based COS was critical to coordinate carpools for several CAB members without their own transportation.

Researchers often convene CABs as a strategy to facilitate broader community engagement; however, establishing and maintaining a close working relationship with a CAB institutes an additional layer of engagement. The CAB informed the project’s approach to implementing a community-based HIV clinical trials intervention study, yet the success of the intervention was largely based on first successfully engaging the CAB members. Building trust, establishing rapport, and remaining open to support CAB member engagement proved critical to developing and implementing all phases of the Project EAST.

CONCLUSIONS

Forming and collaborating with a rural CAB yields benefits for the project and local CAB members. Project EAST CAB members reported a number of positive outcomes, including being heard, valued, and appreciated, as well as the fellowship of the CAB members with each other and the research team. This outcome was important, especially to the PLWHA on the CAB who often shared their feelings and felt supported and [End Page 46] empowered by being heard. CAB meetings were a source of information, not only about research and HIV, but also about the broader needs of these communities related to HIV. Many CAB members noted a feeling of making a contribution to their communities: “We consider ourselves as a bridge, putting together the community, clients, and researchers….the bridge to reach across to help others.” The following quote by two CAB members, also coauthors on this article, summarizes well the CAB role and experiences on our project:

Serving as a member on the community advisory board for Project EAST has been a great experience. It has allowed the average community member a chance to be heard and “listened to” concerning HIV/AIDS and other health disparities. It also allows our voices to be the guiding voices through the project’s phases. We feel that what we share at each CAB meeting is valued and appreciated. The dialogue between the staff and community members seems very genuine and focused on one common goal. The CAB also allows community members to be actively involved from a community perspective. Members get to glance inside scientific research and help establish a new way of doing community research.34

Many community-based research initiatives include community consultative bodies, of which CABs are one type, to guide the research process. However, research teams remain in need of practical examples of how community members can be engaged to inform study activities and the direct impact of those activities on the research. The use of CABs in rural communities and highly stigmatized conditions are critical to create local salience for projects and maximize impact on the local community and study outcomes.

Malika Roman Isler
University of North Carolina at Chapel Hill
Margaret Shandor Miles
University of North Carolina at Chapel Hill
Bahby Banks
University of North Carolina at Chapel Hill
Lexie Perreras
University of North Carolina at Chapel Hill
Melvin Muhammad
Project Momentum
Donald Parker
Project Momentum
Giselle Corbie-Smith
University of North Carolina at Chapel Hill
Submitted 2 May 2013, revised 26 September 3013, accepted 23 December 2013. Research for this project was supported by the NIH CTSA at UNC-CH Grant UL1TR000083 and the National Institute of Nursing Research, Grant No. R01 NR010204-01A2.

ACKNOWLEDGMENTS

The authors acknowledge the Community Advisory Board for their invaluable contributions since the project’s inception, Joaisha Bland for conceptual contribution, and Adina Black for administrative support in manuscript preparation.

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