Investigating Safety Concerns and Harm Reduction in Entheogenic Churches: The Case for Community-Based Participatory Research.

Death from opioid use is a growing public health concern, with stark racial and ethnic disparities. The randomized controlled trial described here aims to improve initiation and engagement in harm reduction services for Black and Latine people who use drugs to minimize mortality in these populations. The trial is informed by a Community Advisory Board (CAB) of stakeholders from racial and ethnic minoritized backgrounds committed to promoting health equity in populations disproportionately impacted by the drug overdose crisis. CABs are an underutilized mechanism for engaging communities in research to improve health outcomes. Hence, in this manuscript we outline the process and methods employed in creating a CAB, describe its impact on our research study, and recognize the challenges and adaptations made to the CAB during the study.CAB recruitment targeted active community members from Black and Latine communities in the Bronx, NY and New Haven, CT. After attending community organizational meetings in each place, follow-up email efforts were unsuccessful, prompting a revised approach. Emphasizing the study’s focus on historically excluded voices, “research-naïve” individuals were sought through online searches and local grassroots organizations, excluding those affiliated with harm reduction groups to minimize bias. Once CAB members were identified, a remote orientation was held, and the CAB began providing regular feedback on research activities, from participant recruitment to educational script details. CAB members’ diverse identities and life experiences generated nuanced discussions, which were distilled into feedback improving research materials and recruitment strategies. In the future, the CAB will also guide data analysis and research publications. Other areas of emphasis have included straightforward language in study materials, balanced messaging about harm reduction recommendations, and specific community outreach opportunities. Practical barriers that needed to be addressed for optimal CAB functioning included timely compensation with minimal institutional burden and assistance with meeting coordination and communication.The CAB has ensured that Black and Latine community voices are included in guiding our study, promoting equitable and ethical research. As harm reduction research advances, it is essential to center this work around the intersectional identities of people who use drugs to prevent the disproportionate burden and deaths among Black and Latine people.

BackgroundThe use of a Community Advisory Board (CAB) is one method of ensuring community engagement in community based research. To identify the process used to constitute CABs in Zambia, this paper draws on the perspectives of both research team members and CAB members from research groups who used CABs in Lusaka. Enabling and restricting factors impacting on the functioning of the CAB were identified.MethodsAll studies approved by the University of Zambia Bioethics Research Committee (UBNZABREC) from 2008 – 2012 were reviewed to identify those studies that were likely to include a CAB. Eight teams with studies that included a CAB were identified. For each of these studies, consent was obtained to conduct an informal interview with a research team member and to obtain contact details for one CAB member. In total 14 interviews were conducted with 8 research team members and 6 CAB members from 12–30 August 2013.ResultsIdentification of potential CAB members from the community and their participation in developing the terms of reference for CABs was perceived to have contributed to the success of the CAB. Due to the trust that the community had in members of their community the CABs were then in a stronger position to influence community participation in the research. Training of CAB members was identified as a factor that enhanced the functioning of a CAB. Lack of commitment and low literacy levels of CAB members posed a threat to the role of the CAB. Although compensation in the form of a stipend was not provided, CAB members were provided with transport reimbursements for attending meetings.ConclusionsSelection of CAB members from within the community contributed to community confidence in the CAB, enhancing its ability to act as an effective link between study team and community. This contributed positively to the conduct of the study and enhanced community awareness and acceptance of the research. However, establishment of study specific CABs has the potential to compromise CAB independence due to support provided by the research team in the form of transport reimbursements and other forms of support. Consideration should be given to establishing community wide Community Advisory Boards that could function across a range of studies to increase independent objective decision-making.

BackgroundBlack people in the United States face persistent and increasing inequities in addiction treatment access and drug overdose death. Incorporating people with lived experience through community based participatory research (CBPR) approaches can improve understanding of drivers of and solutions to such inequities. However, practical and systemic challenges limit incorporating Black people with lived experience with substance use across each step of the research process. This paper describes the methods, recommendations, and lessons learned from a research team and Black-led community advisory board (CAB) working together across the research process to promote equity in harm reduction and addiction treatment.MethodsThe CENTER Initiative is an academic—community partnership established to address increasing drug overdose deaths affecting the Black community in St. Louis, Missouri. The CAB comprised 10 Black people with lived experience recruited with the help of community-based agency partners. Academic staff dedicated to liaising with the CAB encouraged establishing structure and bylaws toward a self-governing CAB with decision-making power independent of agency partner and research teams.ResultsThe CAB and research team collaborated across all stages of the research process including design (e.g., deciding inclusion criteria), recruitment (e.g., flier development and participant referrals), data collection (e.g., conducting qualitative interviews), analysis (e.g., qualitative coding), and dissemination. Aligned with CBPR principles, dissemination activities extended the impact of the research to create sustainability and community empowerment (e.g., through advocacy, direct intervention, capacity building, and funding). Key lessons learned for working with a CAB facing intersectional oppression include a balanced approach incorporating structure and flexibility, a need for adequate personnel and funding support, and the importance of relationship building.ConclusionIntegrating people with lived experience into the research process through CBPR can mitigate the harms and inefficiencies of research while enhancing its community impact. The CENTER CAB and research partners creatively collaborated across each step of the research and translated their findings to practical community empowerment and sustainability in innovative ways. Research institutions, funders and other stakeholders must support building relationships and capacity among academics and people with lived experience to advance racial health equity and justice in substance use research and outcomes.

BackgroundEmerging adults aged 18–30 years face challenges during life transitions, with an added burden of navigating the health care system and additional costs associated with diabetes. This stress is compounded by overall low levels of health insurance literacy in this population, as people may not know about available financial and health care resources to minimize suboptimal diabetes outcomes. This study aimed to tailor a financial and health insurance toolkit to emerging adults with type 1 diabetes, including racially, ethnically diverse, and Medicaid-insured individuals, through community-based participatory action research.MethodsAn academic research team and community members from a national organization held six online community advisory board (CAB) content-creation meetings to understand how to tailor a financial and health insurance Toolkit. The CAB was comprised of six racially and insurance-diverse emerging adults with type 1 diabetes and four content experts (clinical, financial, and insurance). Six 60-minute online CAB meetings were held via University Hospitals (UH)-encrypted Zoom over five months. Pre-reading materials were emailed to CAB members before the meetings. A moderator established the purpose of each meeting and briefly discussed meeting rules before each meeting commenced. During the meetings, the moderator guided the discussions and provided the CAB members opportunities to respond and build on one another’s feedback. A deductive thematic qualitative analysis was utilized. Three researchers independently coded the cross-referenced and de-identified CAB meeting transcripts and then convened to reach a group consensus. Two CAB members performed member-checking.ResultsThe following key themes emerged to tailor the Toolkit: ensuring that content covers empowerment and self-advocacy, including genuine stories and multimedia visuals for aesthetics, addressing clinician bias, acknowledging racial and ethnic disparities in care, incorporating cultural representation, and demystifying Medicaid stigma.ConclusionsBy successfully partnering with the CAB and a community organization through a community-based participatory action research approach, we will develop a financial and health insurance Toolkit tailored to the needs of racially and ethnically diverse and Medicaid-insured emerging adults with type 1 diabetes.

Background: Community-Based Participatory Research (CBPR) has proven effective in promoting health research in hard-to-recruit and underserved populations. Tai Chi Prime is a National Council on Aging-certified fall prevention program. However, it has not been widely disseminated in African American (AA)/Black and Latinx communities. Guided by the Consolidated Framework for Implementation Research (CFIR), this study examined the process of working with a community advisory board (CAB) to adapt and disseminate Tai Chi Prime within these communities, as well as facilitators and barriers to CAB success. Methods: Eight CAB members met with researchers monthly virtually over a two-year period. Meetings focused on reviewing Tai Chi Prime materials, discussing cultural adaptations, and identifying dissemination strategies relevant to AA/Black and Latinx communities. Detailed notes from 24 meetings were compiled. In addition, semi-structured interviews were conducted with five CAB members and two researchers to capture individual reflections on their experiences, roles, and perceived impact. Data was analyzed using directed content analysis. Results: CFIR constructs helped illuminate how CAB members' embedded community expertise, organizational partnerships, available resources, shared vision and transparent communication influenced the cultural adaptation and dissemination of Tai Chi Prime. Study findings also highlight important areas that extend beyond CFIR, particularly the cultural knowledge and power-sharing responsibilities undertaken by CAB members as co-researchers. These insights underscore the need to integrate equity-focused and community-engaged research principles into implementation frameworks when working with communities of color. Conclusions: Findings highlight the value of leveraging existing academic-community partnerships. Community-engaged researchers can use the lessons learned from this CAB to build a replicable model of sustainable partnerships with their AA/Black and Latinx community partners, as can others involved in health services research and policy.

From Research to Practice: A Community-Based Participatory Research (CBPR) Approach to Develop an Education Session for People with Type 2 Diabetes (P16-055-19)

COMMUNITY INSIGHT ON THE ETHICAL, LEGAL, AND SOCIAL IMPLICATIONS OF STROKE GENOMIC AND BIOBANKING RESEARCH IN SUB-SAHARAN AFRICA

BackgroundEngaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards (CABs) is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini (formerly known as Swaziland), which was implemented as part of the MaxART Early Access to ART for All study.MethodsTrained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role.ResultsThe MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: (1) promoting ethical conduct, in particular privacy, consent and confidentiality; (2) communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and (3) liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified.ConclusionThe experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning.

To address cancer disparities in minority and underserved communities, many organizations and research studies use a community advisory board (CAB) to better understand the needs, preferences, and perceptions of communities experiencing health inequities. Researchers have described a range of problems resulting in less than optional engagement of CAB members. Academic members of an NCI-funded cancer partnership interviewed 15 of the 20 members of their CAB to better understand their perceptions of their roles and expectations, as well as barriers and facilitators of engagement. Two trained team members coded the transcripts and conducted qualitative analysis using an iterative inductive/deductive framework. Deductively, we used principles of community-engaged research, and inductively we used coded quotes to identify details in the CAB members’ perspectives. The research team collaborated in organizing major themes into a conceptual framework to describe context, expectations, barriers and facilitators, and recommended strategies for strengthening involvement and benefit of CAB participation for its members. CAB members identified individual factors associated with their involvement including skills (communication, problem solving, interpersonal, leadership, professional, and advocacy), and motivations (community commitment, personal or family experience with cancer). The interviews indicated that there is a gap between CAB members’ perceptions of their roles and what they expect from participation and attendance in CAB meetings, and those of the academic team as conveyed verbally, in the CAB manual, and during onboarding activities. Barriers to enthusiastic engagement include disruptions associated with the COVID experience, members’ competing priorities, and role ambiguity. The CAB members’ resources and connections to the community were identified as facilitators. All these factors influenced the amount and quality of engagement of members with the academic partners and the community at large. Participants suggested many useful adaptations of the CAB-academic partnership, including enhanced training, improved communication, explicit role definitions, clear expectations around engagement with research, and better onboarding for new members. Scientists using a CAB to enhance community engagement should approach building a robust CAB as a deliberate process involving considerable planning, organization, and attention. Projects using a CAB can use the findings from this project to organize a community-academic partnership that will effectively and efficiently contribute to clinical, translational, and community-engaged work addressing cancer health disparities. Citation Format: Leah Alexander, Jennifer Erves, Rebecca Selove, Ila McDermott, J'la Jenkins, Phillip Morris, David Schlundt. Qualitative insights into building an effective community advisory board for cancer disparities research [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B076.

This case study examines the perspectives of rural community advisory board (CAB) members regarding the opportunities and challenges of partnering with academic investigators on funded research. We used a sequential exploratory design to evaluate the phenomena. Qualitative and quantitative data from CAB members were integrated to gain better understanding. Results showed that CAB members valued professional networking and gaining new evidence-based knowledge to enhance their professional practices. They identified rurality, the academic research process, and fulfilling research roles as the most significant challenges. CAB members also believed that strong community-based leaders had been essential in promoting and sustaining a shared vision for evidence-based research solutions to their community problem. Self-evaluation is essential for effective CAB research partnerships, and nurse researchers can strengthen these collaborations by (a) providing continuing education on research and evidence-based practices, (b) assuring that perceived benefits of CAB participation outweigh perceived challenges, and (c) supporting community-based leadership.

This case study describes the formation of the Intercultural Diabetes Online Community Research council (iDOCr) and community advisory board (CAB) to engage the diabetes community and researchers in the codesign of community-based participatory research (CBPR) to examine online peer support in type 2 diabetes (T2D). Social media engagement was the foundation for CBPR knowledge generation. During the project, the iDOCr council and CAB (n = 27) met quarterly via video conferencing and three times in person during national diabetes meetings. Data from four Twitter chats were used to explore the usefulness and utility of Twitter data to learn about concerns and priorities of the diabetes online community (DOC) and supported the evolution of iDOCr, the development of a research question and the design of a CBPR study. The iDOCr project (1) created a diverse CAB; (2) raised awareness of iDOCr and online peer support, which resulted in support and trust from key opinion leaders within the DOC to enable future partnerships for research and funding; (3) engaged with English- and Spanish-speaking DOC users through social media; and (4) designed a CBPR study supported by Twitter chat data analyses. Integrating the voice of people with diabetes (PWD) and the DOC in designing CBPR, through use of a CAB, ensures the most important and relevant research questions are asked. Additional research focused on online peer support may increase health care provider confidence in referring PWD to this low-cost and relatively accessible resource with the potential power to advance health.

San Francisco Bay Area Filipinas with breast cancer underutilize support services. Our partnership engaged in community-based participatory research (CBPR) that involved formation of a community advisory board (CAB) representing low-income, low-English-proficient Filipinas with breast cancer. While CABs are a standard component of CBPR projects, the process of establishing and fostering CAB involvement has been under studied. This commentary explores the process our team used-building upon the Filipino cultural method of pakikisama which stresses making the other feel welcome, safe, and nurtured-to overcome barriers to active engagement. Challenges included minimizing power imbalances between the research team and CAB, and the establishment of an environment of familiarity, trust and caring among CAB members. We recorded all CAB meetings, transcribed them verbatim, and Tagalog portions were transcribed into English for analysis. Mobilizing pakikisama supported partnership building and allowed CAB members to engage in inclusive dialogue and formulate a culturally relevant support model.

Background:Community advisory boards (CABs) are an established approach to ensuring research reflects community priorities. This paper examines two CABs that are part of the HEALing Communities Study which aims to reduce overdose mortality. This analysis aimed to understand CAB members’ expectations, experiences, and perspectives on CAB structure, communication, facilitation, and effectiveness during the first year of an almost fully remote CAB implementation. Current literature exploring these perspectives is limited.Methods:We collected qualitative and survey data simultaneously from members (n = 53) of two sites’ CABs in the first 9 months of CAB development. The survey assessed trust, communication, and relations; we also conducted 32 semi-structured interviews. We analyzed the survey results descriptively. The qualitative data were analyzed using a deductive codebook based on the RE-AIM PRISM framework. Themes were drawn from the combined qualitative data and triangulated with survey results to further enrich the findings.Results:CAB members expressed strong commitment to overall study goals and valued the representation of occupational sectors. The qualitative data described a dissonance between CAB members’ commitment to the mission and unmet expectations for influencing the study within an advisory role. Survey results indicated lower satisfaction with the research teams’ ability to create a mutually beneficial process, clear communication, and sharing of power.Conclusion:Building a CAB on a remote platform, within a study utilizing a community engagement strategy, still presents challenges to fully realizing the potential of a CAB. These findings can inform more effective operationalizing of community-engaged research through enhanced CAB engagement.

This presentation describes a campus-community partnership established to address cancer disparities in a medically-underserved neighborhood within a large metropolitan urban area. Over the past several decades, the historically African American area has become increasingly isolated and disenfranchised due to demographic changes in surrounding communities. Pilot studies we conducted show higher than expected mortality rates from certain cancers, a high rate of behaviors that increase their risk for cancer (e.g., tobacco use), and a low rate of routine cancer screening and timely access to cancer treatment. As part of our university cancer center's cancer control and community research initiative to decrease local disparities, we created a network of Community Advisory Boards (CAB) throughout our catchment area. The CAB described here was developed to address documented cancer disparities in an area in close proximity to the university's medical campus. We identified community leaders and conducted 20 key informant interviews. With guidance from the CAB, we conducted a door-to-door survey of 250 randomly-selected households in a public housing development to assess community needs related to cancer and barriers to accessing services. A community-based participatory research (CBPR) model was used to engage the community and establish an economic partnership that benefits the community. Benefits include services and employment opportunities. Employing residents as research assistants has been found to maximize recruitment and community acceptance. To date, funded investigations have been conducted on the following: reducing the high prevalence of tobacco use, early detection of oral cancers using biomarkers, stress management for cancer survivors, and screening for conditions related to other chronic diseases such as diabetes. In addition, the university responded to request for services by conducting free annual health screening and education fairs and offering ongoing smoking cessation resources. We will discuss the successes and challenges of this partnership with a community that has minimal infrastructure but is motivated to improve the health of its residents. We will also describe how CAB members are taking ownership of the process and bringing additional resources to the table. Citation Format: Dorothy F. Parker, Tracy Kelley, Eric Thompson, Erin N. Kobetz. Community involvement in prevention research: A model for reducing cancer disparities. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A36. doi:10.1158/1538-7755.DISP13-A36

Community-academic partnerships are increasingly used to engage community members and researchers in research activities; however, little is known about the motivations and perceptions of community members to participate in such projects. The overall goal was to elicit Community Advisory Board (CAB) members' motivations and perceptions of involvement in a community-academic partnership about cancer prevention. An external evaluator conducted 15 one-on-one semi-structured interviews with CAB members of the project. Coders conducted a conventional content analysis to derive themes from the interview data. Emergent themes were grouped into four categories: CAB members' 1) motivation to participate in the project, 2) perceptions that they had insider information, 3) views of roles and responsibilities in project planning and implementation, and 4) challenges and suggestions to improve the community-academic relationship. This study found substantial evidence that CAB members perceived they were working to involve the Hispanic community in health promotion.