Community advisory boards to inform behavioural health research in primary care: protocol for a scoping review

Abstract

Introduction

Most patients receive behavioural healthcare (BH) in a primary care setting, yet much of the BH research was not developed to account for eventual implementation. Areas of research and intervention that are considered priorities to patients may be absent from our existing knowledge base. Engaging the community in the research process can facilitate translation and uptake. A key strategy for community engagement is to employ a Community Advisory Board (CAB). CABs can assist in a number of research processes, including guiding research questions to fit the priorities of the community and creating research materials that are tailored to the patient population and healthcare setting. There is variability in practices and reporting standards for CABs. The field would benefit from a summary of the state of the current literature on CAB utilisation for BH research in primary care. To fill this gap, we will conduct a scoping review to answer the question, ‘What is known about the use of CABs in behavioural health studies in primary care?’.

Methods and analysis

We will use the guidelines for scoping reviews outlined by Arksey and O’Malley: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data and (5) collating, summarising and reporting the results. Our reporting of the results will be guided by the Arnos and colleagues Toolkit for Project-Based Community Advisory Boards, a set of practical guidelines for employing a CAB. To this end, we will report on how well CABs currently employed in BH primary care research match existing guidelines and what gaps need to be filled by future research.

Ethics and dissemination

This review does not require ethics board approval, as no patient data will be collected. We will disseminate findings primarily through journal publications and conference presentations.

Trial registration number

This scoping review protocol was registered on the Open Science Framework (https://osf.io/pa3rz/?view_only=31c558eb395a4a9482ee9c5b57ca1c4c)

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• This scoping review will summarise the state of the literature regarding the reporting of Community Advisory Board (CAB) practices for behavioural health studies in primary care.

• Methods are guided by the five-stage scoping review framework of Arksey and O’Malley.

• Results are grounded in practical and theoretical frameworks for conducting research with CABs.

• Community members were not involved in the creation of this protocol.

Introduction

An increasing number of patients receive behavioural health (BH) care in the primary care setting.¹ BH has been integrated into primary care to increase accessibility to this speciality service.^{2 3} Implementing integrated BH services in primary care offers a host of advantages including a greater likelihood of early detection of mental illness, reduced healthcare costs, reduced stigma of mental health treatment, shorter wait times for mental health treatment and reductions in depression and anxiety symptoms.12 4,6 As integrated BH becomes more common in primary care clinics, research can support our understanding of optimal methods for intervention development and implementation in these settings, as well as a greater understanding of how BH problems manifest in the broad population of primary care patients. BH research is often not designed with implementation in primary care in mind. As a result, there are several implementation considerations that are not necessarily featured in the BH intervention research process, including recruitment of patients that are representative of the community,⁷ conducting research on topics that patients identify as a priority, and developing interventions that account for the needs, literacy, language and culture of the community. One solution is to engage the community in the research process.⁸ Community engagement facilitates the development of research that better fits the priorities of the community⁹ and that community members are more likely to participate in.^{10 11} Community engagement in the research process can bridge the gap from the bench to the bedside and ensure interventions can be effective and are implementable in a real-world setting.¹² Community participation in primary care is a core tenet of the Community-Oriented Primary Care model, which prioritises the population health needs of a community regarding both disease prevention and treatment.^{13 14} Community participation is essential in Community-Oriented Primary Care to inform a thorough understanding of a community’s character, its priorities and the manifestation of its health concerns.¹⁵ These components can generalise to other primary care models by prioritising community strengths and needs.

One tool to engage the community in the research process is through participation in a community advisory board (CAB). CABs are groups of community members who longitudinally collaborate with the research team in the design, refinement and/or implementation of the study.¹⁶ They may include patients or other knowledge holders (eg, individuals with lived experience with a condition, individuals living in a geographical community, health professionals and administrators, or community advocates). The use of CABs can improve the success of research by tailoring recruitment strategies and intervention content, promoting partnerships with community organisations that can facilitate recruitment, and assisting with dissemination.¹⁷ CABs are an especially important tool for BH studies, which often are not developed with the primary care setting in mind. Behavioural health care involves sensitive, sometimes stigmatised subject matters, and CABs can play a critical role in de-stigmatising BH topics as well as building trust and engagement with community members,¹⁸ including with racial and ethnic groups who have historically been excluded from behavioural health research.¹⁹ CABs can address social determinants of health, helping investigators and healthcare systems better meet the needs of populations that experience higher barriers to healthcare and lower engagement in health research.²⁰ CABs can be a tool for promoting health parity, including through informing cultural tailoring of research materials,²¹ which is particularly important for mental health research given the cultural influences on expressions of distress.²² Finally, CABs may disrupt the echo chambers that can occur when researchers are disconnected from the patients and the community they serve.¹⁹

Conducting BH research in primary care may benefit greatly from using a CAB. In primary care, the need to consider the complex nature of mental health needs must be balanced against the limited time for intervention and the need to optimise efficiency to treat the larger volume of patients.²³ CABs can advise on specific study tasks, such as how to recruit patients from the large primary care population into BH research and ensure their engagement and comfort in the research process. In this way, CABs can help to address the stigma surrounding mental health conditions.²⁴ Primary care BH is unique for its heterogeneous patient population. Patients for whom brief primary care-based treatment is sufficient are seen alongside those who require a higher level of care or more specialised care.²⁵ CABs may assist with determining the appropriate materials to accommodate a broad range of patients in this setting.¹⁶ In addition, BH clinicians often provide psychoeducation on mental health and BH treatment to patients who may be unfamiliar with BH services, to enhance patient buy-in.²⁶ Primary care may be the first and only contact with BH that many patients from the community have, and CABs can play a crucial role in guiding communication with patients to build trust and engagement, including creating research materials that communicate potentially stigmatised information in accessible, culturally appropriate ways. Social participation in research and clinical care can be an act of empowerment for community members,²⁷ allowing them to take a seat at the table of healthcare decision-making.²⁸ Empowering community members is especially important for those who have historically been denied access to healthcare and to involvement in healthcare research. Involvement of the community in the research process through the engagement of the CAB enables the creation of interventions that community members are more likely to be invested in¹¹ and may motivate wider engagement in BH skills and health promotion for the primary care patient population. However, the same barriers that exist for reaching members of the community with BH research can also pose restrictions on implementing and sustaining CABs, as individuals who are less connected to the healthcare system may find it difficult to participate, for example, due to limitations on their time, language barriers and power imbalances between researchers and community members.¹¹

The role of CABs can thus be variable, and it is helpful to determine the logistics and role at the outset of its formation. According to the Toolkit for Project-Based Community Advisory Boards developed by Arnos and colleagues,²⁹ there are seven considerations to ensure that the CAB is thoughtfully conducted to maximise utility and respect for CAB members: (1) CAB objectives, (2) CAB readiness, (3) research design (including how the researchers will incorporate feedback), (4) membership composition, (5) CAB member recruitment, (6) CAB formation and operations and (7) membership engagement. However, there is currently no consensus regarding methods for employing CABs in primary care, nor standards for reporting on their use. There is a wide range of practices for using CABs, including variability in what parts of the research investigation they are employed in, using what methods, and with what feedback on the process.^{30 31} Summarising the literature on how CABs are used for BH research in primary care can comment on strengths and limitations of the literature to inform future studies.

Here, we present the protocol for a scoping review addressing the question: What is known about the use of CABs in BH studies in primary care? Consistent with the purpose of scoping reviews, which is to map the literature on a broad topic area,³² we will summarise the variety of practices that exist for using CABs in primary care BH studies across a variety of research designs and methods. Specifically, we will report and evaluate methodologies for building and using CABs in this setting, including CAB membership, the extent of their involvement in the research process, the specific research questions for which their input is sought and how the CABs are evaluated. We aim to summarise the state of the literature and elucidate research gaps to inform future studies.

Methods and analysis

We will follow the five-stage scoping review framework of Arksey and O’Malley³³ with the following stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data and (5) collating, summarising and reporting the results. We chose a scoping review because there is no consensus on methods or reporting standards for employing a CAB in BH primary care research and so we expect variability in methods for reporting on CABs in this setting. A broad analysis of available evidence can assist with identifying gaps in knowledge that can inform future research.³⁴ The review will also follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR).³⁵ We will use a PRISMA diagram to report the results of the literature search, including the number of: (1) articles screened for titles/abstract only, (2) full articles screened, (3) articles meeting inclusion criteria, (4) articles included in the final review.

Stage 1: Identifying the research question

The central research question of the review is: What is known about the use of CABs in behavioural health studies in primary care? We chose a broad research question given the nature of scoping reviews and our desire to map the current state of the evidence. Below we detail key information to extract, with a particular focus on understanding the methodology of employing CABs in this setting.

Stage 2: Identifying relevant studies

A medical research and instruction librarian (AC) developed thorough and robust search terms across multiple databases: Ovid Medline, EMBASE, PsychINFO and Web of Science. These search terms will be iteratively refined by the research team, consistent with best practices for scoping reviews.³⁶ See online supplemental appendix for the full preliminary search terms for each database. Each search contained the following categories of search terms: primary care, CAB and behavioural health. We will consult the grey literature through adjunctive searches using Google Scholar. We will conduct additional targeted adjunctive searches for well-known primary care initiatives that may employ CABs such as the mental health GAP programme³⁷ and clinical translation and science institutes.

Stage 3: Study selection

Inclusion criteria are studies that: (a) are primary studies of any design (qualitative, quantitative, narrative) or protocol papers); (b) sampled adults (age 18+); (c) examined behavioural health (including intervention and non-intervention research), meaning any research on psychiatric disorders, psychological considerations for physical health conditions, or mental or emotional processes; (d) were conducted in primary care (inclusive of internal medicine, family medicine, general practice, community health clinic, federally qualified health centre); (e) included a CAB (under any name, including stakeholder advisory board). Specifically, we will use the definition of a CAB from Arnos and colleagues²⁹ as a group, ‘composed of community members who share an identity, geography, history, language, culture or other characteristic or experience and convene to contribute community voice to an initiative, program, policy or project’. Exclusion criteria are: (a) reviews, commentaries, meeting proceedings or book chapters (b) not published in English or Spanish. We will use Covidence for removing duplicate records, screening and managing citations. After removing duplicates, two reviewers will independently screen the title and abstract of each article using the predetermined inclusion and exclusion criteria. They will meet to review discrepancies, and if needed, a third reviewer will resolve through a tie-breaking vote. Then, the two reviewers will screen the remaining full articles independently, with the third reviewer again resolving disputes.

Stage 4: Charting the data

The two reviewers will extract data from eligible studies using a standardised tool modelled after the Joanna Briggs Institute tool³⁸ with the senior author reviewing the extracted data as needed to confirm accuracy. We plan to extract the following data: (1) author, year of publication, (2) study population, (3) study design, (4) aim of study, (5) major findings, (6) composition of the CAB—who is serving, (7) What is the role of the CAB in the study and what domains of the research do they discuss, (8) what is the impact of the CAB in terms of decisions made (eg, intervention session content), (9) logistics of employing the CAB (eg, how frequently they meet and through what means), (10) what measures, if any, are used to assess the CAB?, (11) qualitative themes (if present). We will descriptively report qualitative data to fit the descriptive nature of our research question (ie, describing CAB methodologies). Specifically, we will conduct deductive thematic analysis to map qualitative findings onto the above extraction categories and the Arnos and colleagues²⁹ Toolkit for Project-Based Community Advisory Boards guidelines for conducting CABs. This approach has been used in prior scoping reviews in which descriptive results were expected.^{39 40}

We will not use a quality appraisal tool, given the expected small sample size of CAB members and variability in article design and reporting, including the potential for CAB information not to be the central data reported in most articles. We will comment on the appropriateness of a systematic review and need for quality appraisal. We will also make specific recommendations for quality appraisal tools that may be optimal for this research question. Heterogeneity among studies will be reported descriptively based on the amount of information provided that matches the extraction categories. From preliminary searches and understanding of the literature, we expect variability in the amount of detail provided on CAB practices.

Stage 5: Collating, summarising and reporting the results

We will put the data into a table format that will allow us to analyse the findings with each column representing the question above and including a column summarising the main findings from each article. Our reporting of results will be guided by the Arnos and colleagues²⁹ toolkit for using project-based CABs, including outlining CAB membership, the CAB role in research programme design, CAB operations and membership engagement and evaluation.

We began screening in April 2024 and plan to complete the review by May 2026.

Patient and public involvement in research

Patients were not involved in the design of this protocol. We are conducting this review to inform community engagement for ongoing and future studies in a primary care clinic.

Ethics and dissemination

This review does not require institutional review board review, as no patient data will be collected. We will disseminate findings through published manuscripts and conference presentations. We will provide a summary to our primary care clinic champions.

Discussion

We described the protocol for a scoping review to answer the question, what is known about the use of CABs in behavioural health studies in primary care? This review will summarise common practices of conducting BH research with CABs in this setting and will serve two functions. First, this review will provide a practical guide for researchers looking to build CABs in a primary care setting. We will report on the role that CABs typically take in the primary care setting, how they operate, what questions they provide answers to and the logistics of their meetings. Information on what has been done previously can help guide researchers. Second, we will elucidate gaps in the literature regarding CAB practices and reporting standards. We expect variability in the extent to which CAB methodology is described in these manuscripts, given that the CAB may be the main focus of some articles¹⁶ but not others. We will document this variability and lessons learnt to inform the reporting of CAB practices in future manuscripts.

Our review will be guided by existing methodological frameworks to ensure the rigour of the methods and utility of the results. In particular, we will use the Arksey and O’Malley³³ framework to ensure that our review is conducted according to the gold standard practices for scoping reviews. We will also use the Arnos and colleagues²⁹ Toolkit for Project-Based Community Advisory Boards to organise data extraction and present results, to enhance applicability to practice. By examining how existing CAB methodology and reporting practices align with the guidance in this tool, we can determine any gaps between guidance for CAB best practices and the state of the literature of how CABs are used and discussed in BH primary care research.

This review aligns with increased recognition that research conducted in consultation or collaboration with the community can enhance implementation.^{10 11} By using a CAB, BH primary care researchers can better bridge the gaps between research and the community that can interfere with dissemination. With the growing interest in community-based participatory research and the Community-Oriented Primary Care model,¹⁵ there is greater understanding of the need for community involvement in healthcare research and treatments. CABs can bring knowledge of barriers to care (eg, poverty, stigma, discrimination) of communities that have limited BH healthcare access and can prioritise finding solutions. CABs can drive the creation of BH research that is aligned with community interests to ensure ongoing investment of the community in BH research, treatment and policy. This scoping review will summarise the state of the literature to improve CAB practices and reporting standards moving forward.