Facilitating a Remote Community Advisory Board to Engage Practitioners during Complex Emergencies - An Example from Northwest Syria

Prioritising health care in complex emergencies

Community-based participatory research (CBPR) is a collaborative research process which engages researchers and community members as equals during all phases of a research project. This approach promotes social change and enhances the practical relevance of the research. One key tool in CBPR is the community advisory board (CAB), where individuals with lived experience and community organizations are integrated into the research process and align research with community priorities. This scoping review: (1) explores best practices for effective recruitment and engagement of people with lived experience (PWLE) on CABs; and (2) identifies the scope of literature on minimizing power dynamics between organizations and community members with lived experience who work on CABs together. A scoping review was conducted utilizing Embase, Medline and PsychINFO. Peer reviewed publications and grey literature published between Jan. 1, 1990, and Mar. 30, 2023, were considered. Two independent reviewers screened references in successive stages of title/abstract and full-text screening. Conflicts were resolved by consensus or a third reviewer. Selected studies were analyzed using a content analysis strategy with NVIVO software. 2346 peer-reviewed studies and 15 articles of grey literature were identified with initial search and 53 texts were included in final analysis. Three main themes were identified; recruitment of PWLE; engagement of PWLE; and navigating power dynamics of PWLE working alongside representatives of community organizations. Within recruitment, subthemes of CAB selection strategies, challenges, and successes were reported. Within engagement, subthemes of CAB management, CAB roles and activities, capacity strategies, challenges, successes, and compensation of members were reported. Lastly, within PWLE working alongside organizational representatives, subthemes of challenges and mitigation strategies were reported. We emphasize the importance of relationship building and mutual respect within the CAB; clearly defined roles and responsibilities to reduce role confusion and tokenism; appropriate compensation, whether monetary or otherwise, bi-directional capacity building; and the use of a cultural insider whilst establishing/operating a CAB. We identified key factors that contribute to the effective recruitment and engagement of PWLE on CABs in the context of CBPR. This scoping review, completed by a CBPR group, identified key factors that can be utilized by other CBPR groups to better engage PWLE on CABs. Further research is needed to demonstrate the proposed best practices’ influence on CAB effectiveness. This scoping review used the Arksey and O’Malley scoping review methodology, with the addition of Levac’s sixth stage of consultation, in consultation with I-CREAte’s own CAB. This work has been completed by a CBPR group, and informed by its CAB, thus grounding it in the needs of CBPR groups and PWLE engaging in research, to provide resources for groups who employ similar models. This scoping review is narrowed to the realms of social and health services, and the relevance to other domains is uncertain. This review was restricted to literature in English and French, thus may have excluded relevant research published in other languages. Despite all efforts to be thorough with identification of the literature, we may have missed relevant publications.

Partnering With Patients With Sarcoidosis to Implement a Community Advisory Board

Background Community Advisory Boards (CABS) have played an important role in ensuring community oversight of AIDS vaccine trials and are an accepted part of the ethical conduct of AIDS vaccine trials. China’s political system limits community engagement in trial communities and wholesale application of western CAB approaches does not accomplish the intent of a CAB. We adapted the CAB concept to China’s political system through a multi year process of research and pilot testing in collaboration with six provincial CDCs conducting AIDS prevention research studies. Methods Using questionnaires developed by IAVI for a global CABS study, we carried out an assessment of existing CABS in six provinces in China. The questionnaire examined membership, process, and governance along with other aspects of CABS operations. The results were used to revise standard CABS guidelines developed by IAVI for use in Africa and India. The revised guidelines were pilot tested in three sites, in Yunnan, Guangxi, and Shanxi. In depth interviews were also conducted with CAB members and local CDCS. Results

BackgroundCommunity advisory structures such as Community Advisory Boards (CABs) play an important role of helping researchers to better understand the community at each phase of the clinical trial. CABs can be a source of accurate information on the community, its perception of proposed research and may identify factors that make community members vulnerable to the problem under investigation. Although CABs help to build mutually beneficial relationships between the researcher(s) and the communities in which the clinical trial is being implemented, effective engagement would require ethical guidance and regulatory oversight.The study assessed the stakeholders’ perspectives regarding the regulatory oversight of CABs in Uganda.MethodsThis was an exploratory study employing qualitative methods of data collection and analysis. Key informant interviews (KIIs) with the trial investigators, CAB chairpersons, community liaison officers, regulators and Research Ethics Committee (REC) chairpersons were conducted. A KII guide was designed and utilized during key informant interviews. The guide included questions on role of investigators and CAB members in clinical trials; challenges of community engagement; facilitation of CABs; regulatory oversight of CABs; work relationships between investigators and CABs; and opinions on how community trials should be conducted among others. All interviews were conducted in English.Qualitative data were transcribed verbatim. A code book was generated based on the transcripts and study objectives. Thematic analysis was used to analyze data and identify themes. Atlas ti was used to support data analysis.ResultsOf the 34 respondents, 35.3% were investigators, 32.3% CAB chairpersons, 23.5% research regulators/REC Chairs and 8.8% community liaison officers. The findings of the study revealed that CABs are appointed by the research institution/researcher, operate under the guidance of the researcher with limited independence. Additionally, the CABs provide voluntary service and lack guidelines or regulatory oversight. Four themes emerged.ConclusionThe operations and activities of CABs are not regulated by the national regulators or RECs. The regulatory oversight of CABs should be based on contextualized ethical guidelines. Need for additional training in research ethics, community engagement and sensitization on available ethics guidelines for research.

EUPATI Spain and EURORDIS have implemented a patient engagement model in health product research and development (R&D): international, independent Community Advisory Boards (CABs), where patients collaborate with health product companies in patient-led CAB meetings. We have evaluated the methodology of these CAB meetings. We conducted a mixed-methods cross-sectional survey study from 2022 to 2023 to analyze the satisfaction level and perceived usefulness of CAB meetings between CAB members and company representatives across 15 CAB meetings. After each meeting, participants received an online survey comprising ten closed-ended questions on a five-point Likert scale and two open-ended questions about key takeaways and issues to improve. Written responses to open-ended questions were analyzed by AI-assisted ATLAS.ti, which categorized and quantified them semantically, and by contextual relevance and frequency. Characteristics of meetings and participants were reported, and survey responses were compared between CAB members and company representatives. Most meetings were hybrid (53.3%). A total of 252 participants attended the meetings (158 [62.7%] CAB members, 94 [37.3%] company representatives). The overall survey response rate was 54.8%, 59.5% among CAB members and 46.8% among company representatives. Most participants found the meetings useful (86.0% CAB, 93.2% company), were satisfied with the topics addressed (77.4% CAB, 93.2% company), and met their expectations (76.7% CAB, 93.2% company). Both groups considered that the company understood the CAB’s point of view (80.2% CAB, 90.9% company). Still, only 59.3% of CAB members thought the company would reconsider its plans, vs. 88.6% of company representatives. The three main takeaway areas were “Collaboration and Partnerships”, “Study Design and Protocols”, and “Communication and Education”. The main issue to improve was “Meeting Organization and Structure”. Overall, the satisfaction level and perceived usefulness of the CAB meetings were favorable. CAB members exhibited less favorable responses to all closed-ended questions than company representatives, especially regarding the possible influence on company actions. The open-ended responses reflected higher levels of agreement and collaboration, supporting the CAB model’s potential. Some issues, mainly related to meeting organization and the hybrid format, need improvement. Future studies are required to assess the actual impact of CAB meetings on R&D. EUPATI Spain and EURORDIS have implemented a patient engagement model in health product research and development: Community Advisory Boards (CABs). CABs are international, independent groups of patient representatives selected by their community who meet regularly with health product companies to discuss a wide range of topics, from study design to compassionate use of therapies. We have analyzed the satisfaction level and perceived usefulness of CAB meetings for CAB members and company representatives who attended 15 CAB meetings from 2022 to 2023, using a seven-minute online survey after each meeting. The survey included ten closed-ended questions and two open-ended questions on key takeaways and issues to improve. The feedback was highly positive. Most participants found the meetings useful, were satisfied with the topics addressed, and met their expectations. However, CAB members exhibited slightly less favorable responses to all closed-ended questions than company representatives, especially regarding the influence of CAB meetings on future company actions. The three main takeaway areas were “Collaboration and Partnerships”, “Study design and Protocols”, and “Communication and Education”; and the main issue to improve was “Meeting Organization and Structure”. Overall, the results were favorable. Although the closed-ended questions showed less confidence among CAB members on the future influence of the meetings, the comments from the open-ended questions reflected higher levels of agreement and collaboration and supported our CAB model’s potential. Some issues, mainly related to meeting organization and the hybrid format, need improvement. Future studies are required to assess the actual impact of CAB meetings on companies’ actions.

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.

This paper describes our approach to forming and engaging a community advisory board (CAB) to assist in the development of a proposed exercise intervention pilot study. The intervention aimed to examine the effects of exercise on exercise adherence, the provision of partner support and receptivity to partner health influence, and cardiometabolic risk in older African-American romantic couples. CAB invitations were extended to local community members and leaders who had a stake in the health of the target population. Seven individuals accepted the invitation andattended at least one of two CAB meetingsduring which we proposed ideas for the exercise intervention pilot study, then solicited CAB input in four key areas related to the study including: (1) priority health concerns of the target population, (2) the intervention protocol and methodologies, (3) cultural relevance, and (4) sustainability. Two investigators jointly led both CAB meetings, which lasted approximately 3h each. Recorded community feedback was summarized and coded using a thematic analysis approach. Themes were identified and agreed upon within the fourareas identified above. Overall, the proposed study was well-received by the CAB and considered beneficial forand relevant tothe target population. Although not all suggestions put forth by the CAB were feasible given the inherent limitations of pilot work, we made multiple study modifications as a result of CAB recommendations. Further, all CAB feedback helped inform plans to launch the intervention on a larger scale and were vital in ensuring that the pilot study was valued in the local community. Although community-based participatory research that originates within a community may be preferable, we demonstrate the utility of a community-partnered approach to intervention design in a vulnerable population. This model could assist researchers who wish to engage the local community to help develop a preliminary idea for a health-related intervention.

BackgroundTo improve the implementation of clinical trial interventions, there is a need to facilitate communication between key stakeholders and research teams. Community Advisory Boards (CAB) bring together a range of stakeholders not historically included in the research process to inform and work collaboratively with research teams.ObjectiveTo describe our procedures and processes for (1) integration of a CAB into a pragmatic clinical trial of a telehealth-delivered group mindfulness program for persons with chronic low back pain (cLBP) within primary care, and (2) for the rapid uptake and implementation of CAB recommendations.MethodsThe CAB we convened includes persons with cLBP who have undergone the mindfulness intervention, health care system leadership, advocacy groups, and mindfulness experts. The CAB members underwent a two hour initial training that introduced the research process and the CAB’s role as research partners. The CAB met monthly for 1 hour. We used the Lighting Report method to summarize meetings and share feedback with the research team.ResultsThe recommendations of the CAB during the first year they met were divided into recruitment, informed consent, and survey recommendations. The study website also was overhauled based on recommendations, including a more engaging first page with rotating images of nature and testimonials. The language on the website was edited to be more concise and participant-friendly. The CAB recommended talking points to discuss with participants during screening or informed consent about the benefits of participating in research.ConclusionWe established a CAB that represented diverse perspectives, organizations, and experience with cLBP and mindfulness. The differing perspectives of the CAB resulted in recommendations that the research team itself would not have decided on their own. The Lightning Reports were also an effective way to efficiently communicate the CAB recommendations to the research team.

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.

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.

Community Advisory Boards (CABs), as a form of community engagement, provide an important mechanism to ensure that research aligns with community needs and priorities by representing broader community interests and guiding research accordingly. Tuberculosis (TB) and multidrug-resistant tuberculosis (MDR-TB) remain significant public health concerns, particularly due to resistance to key first-line anti-TB medications, and individuals affected by these conditions often face stigma and discrimination that hinder timely diagnosis and treatment adherence. Addressing these challenges requires community-driven strategies and improved access to health services, with CABs serving a central role in bridging gaps between researchers, healthcare providers, and affected communities. This study explored the contributions of CAB members in supporting TB/MDR-TB clinical trials, the challenges experienced by trial participants, and the strategies employed to address these challenges. Using an exploratory qualitative design, in-depth interviews were conducted with 17 stakeholders involved in TB/MDR-TB clinical trials, and data were analyzed using deductive thematic analysis. The findings highlight persistent stigma and discrimination, limited understanding of the role and functions of CABs, inconsistent budget allocation, reduced participation, and diminished CAB influence throughout the research process. The study underscores the essential role of CABs in enhancing community engagement in TB/MDR-TB clinical trials and emphasizes the need for greater awareness, advocacy, and institutional support to strengthen their contributions. Adequate and sustained funding, along with systematic planning and implementation, is critical for reinforcing CAB roles and promoting more ethical, inclusive, and responsive public health research practices in Ethiopia and other low- and middle-income countries.

Purpose: There is limited research on the use of community advisory boards (CABs) in health research with transgender and nonbinary communities. Transgender communities are navigating challenging histories of health researcher exploitation and research distrust alongside exponential research growth. We explored strategies for forming and managing CABs when conducting transgender community-informed health research. Methods: We used purposive and snowball sampling to identify key informants (KIs): research leaders, implementing staff, and community partners engaging in transgender health research. Between October 2018 and December 2020, we conducted 30 semi-structured in-depth interviews. We used coding followed byiterative thematic analysis and memoing to identify themes. Results: KIs emphasized the importance of involving CABs early in the research process and communicating transparently about their decision-making power and roles. They urged research teams to anticipate and address both multilevel (e.g., gender affirmation-related and socioeconomic) and historical (e.g., local research harms) barriers to CAB participation, and to intentionally engage groups that are historically underrepresented in research. KIs warned against tokenistic CAB models and called on researchers to show up for transgender communities beyond research goals. Research-related trainings and skills-building opportunities could equip CAB members to contribute meaningfully to research decisions, but KIs find that they are often under-planned and under-budgeted. Health Equity Implications: This study contributes to our understanding of how to engage and support CABs working on transgender health research, and how sociostructural factors shape their experiences. We offer a series of recommendations and questions researchers should consider when forming CABs for transgender health research and community-informed research broadly.

BackgroundCommunity engagement is a key component in health research. One of the ways health researchers ensure community engagement is through Community Advisory Boards (CABs). The capacity of CABs to properly perform their role in clinical research has not been well described in many resource limited settings. In this study, we assessed the capacity of CABs for effective community engagement in Uganda.MethodsWe conducted a cross sectional study with mixed methods. We used structured questionnaires and key informant interviews (KII) to collect data from CAB members, trial investigators, and community liaison officers. For quantitative data, we used descriptive statistics while for qualitative data we used content analysis.ResultsSeventy three CAB members were interviewed using structured questionnaires; 58.9% males, median age 49 years (IQR 24–70), 71.2% had attained tertiary education, 42.5% never attended any research ethics training, only 26% had a training in human subject protection, 30.1% had training in health research, 50.7% never attended any training about the role of CABs, and 72.6% had no guidelines for their operation. On the qualitative aspect, 24 KIIs cited CAB members to have some skills and ability to understand and review study documents, offer guidance on community norms and expectations and give valuable feedback to the investigators. However, challenges like limited resources, lack of independence and guidelines, and knowledge gaps about research ethics were cited as hindrances of CABs capacity.ConclusionThough CABs have some capacity to perform their role in the Ugandan setting, their functionality is limited by lack of resources to facilitate their work, lack of independence, lack of guidelines for their operations and limited knowledge regarding issues of research ethics and protection of the rights of trial participants.

BackgroundAging and dementia researchers continue to face challenges in recruiting and retaining participants who represent demographically diverse communities. This continued and critical lack of representation threatens the generalizability and applicability of countless study findings and severely diminishes the field’s impact on clinical outcomes. Recruitment science evidence strongly recommends that to achieve equity researchers should design and conduct research hand‐in‐hand with the input of potential and current participants, as well as their loved ones. To do so, partnerships between researchers and demographically diverse communities must be built and maintained before, during, and after individual studies. Indeed, literature indicates that persons from demographically diverse communities want to contribute to research, even beyond traditional research participation, including serving on community advisory boards and sharing their lived experiences in public forums. This symposium will discuss innovative methods currently being used to gather, understand, and incorporate diverse lived experiences with the goal of improving aging and dementia research generalizability and applicability.MethodWe will discuss research methods that various stakeholders—including researchers, study sponsors, funders, and participant groups—can utilize throughout the research process, from conceptualization and conduct to dissemination.ResultThis presentation will highlight community‐based and participant‐centered recruitment and retention approaches that promote understanding and incorporating diverse older adults’ and carers’ lived experiences. Approaches that will be discussed include, lived experiences panels, community and/or participant advisory boards, research ambassadors, and inclusion in scientific conferences. Furthermore, this session will feature a lived experience panel comprised of demographically diverse persons along the dementia continuum, from at‐risk to living with dementia, and their care partners. This session can benefit researchers, clinical trialists, and the field of aging and dementia research, by expounding on the importance of and developing strategies to meaningfully engage with demographically diverse communities.ConclusionMeaningful understanding and incorporation of the lived experiences of persons representing demographically diverse backgrounds offers clear benefits to aging and dementia researchers to improve the applicability and translatability of research findings. The participant’s voice is essential in setting research priorities and addressing research‐related challenges to ultimately increase diverse research participation and facilitate equity in aging.