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Abstract
Introduction Community-based participatory research (CBPR) is a collaborative research approach that equally engages researchers and community stakeholders throughout all steps of the research process to facilitate social change and increase research relevance. Community advisory boards (CABs) are a CBPR tool in which individuals with lived experience and community organisations are integrated into the research process and ensure the work aligns with community priorities. We seek to (1) explore the best practices for the recruitment and engagement of people with lived experiences on CABs and (2) identify the scope of literature on minimising power dynamics between organisations and community members with lived experience who work on CABs together.
Methods and analysis This scoping review will follow the Arksey and O’Malley methodological framework, informed by Levac et al, and will be reported using a PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) diagram. Detailed and robust search strategies have been developed for Embase, Medline and PsychINFO. Grey literature references and reference lists of included articles published between 1 January 1990 and 30 March 2023 will be considered. Two reviewers will independently screen references in two successive stages of title/abstract and full-text screening. Conflicts will be decided by consensus or a third reviewer. Thematic analysis will be applied in three phases: open coding, axial coding and abstraction. Extracted data will be recorded and presented in a tabular format and/or graphical summaries, with a descriptive overview discussing how the research findings relate to the research questions. At this time, a preliminary search of peer-reviewed and grey literature has been conducted. Search results for peer-reviewed literature have been uploaded to Covidence for review and appraisal for relevance.
Ethics and dissemination Formal ethics approval is not required for this review. Review findings will inform ongoing and future CBPR community advisory board dynamics.
Registration The protocol has been registered prospectively on the Open Science Framework (https://doi-org.ezproxy.u-pec.fr/10.17605/OSF.IO/QF5D3)
- Patient Participation
- Health Equity
- Protocols & guidelines
- STATISTICS & RESEARCH METHODS
Data availability statement
Data are available upon reasonable request. Not applicable.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
Results of this scoping review will support effective approaches for engaging and minimising power differentials on community advisory boards in community-based participatory research (CBPR).
The review is based on the Arksey and O’Malley framework, informed by the work of Levac, and includes a sixth stage, ‘consultation’, an optional, but important additional step to inform and validate findings from the scoping review.
This work is being conducted by a CBPR group and is informed by the ongoing and participatory process of this group and its community advisory board.
Though we have tried to develop broad search strategies for peer-reviewed and grey literature, we could miss some relevant literature.
Introduction
Community-based participatory research (CBPR) is a collaborative research approach that equally engages researchers, stakeholders and community members throughout all steps of the research process to facilitate social change, provide education, improve community practices and increase the research relevance.1 CBPR emerged in the 1990s, with roots in public health and a focus on integrating community-based knowledge and practice into research.2 In contrast to traditional research approaches that separate the study participants from those conducting the study, CBPR emphasises sharing power whereby members of the community of study participate as equal and active participants, thus making it an appropriate model for working with structurally oppressed populations.3 In CBPR, organisational representatives, community members and researchers all integrate their experiences, contribute to the research process and benefit the community under study.3 One particular goal of CBPR within the healthcare field is to combine knowledge and action for social change to improve community health and mitigate health disparities.4 5
Community advisory boards (CABs) are a tool used in CBPR to ensure the work captures the concerns and priorities of the community under study. CAB members work together with the research team in every phase of the project: identifying the problem under investigation, defining research questions, developing the protocol, collecting and analysing data, participating in knowledge translation and disseminating results. CAB members may support CBPR as representatives of the population that is being served, with members of the community sitting together on a board and acting as a formal interface between researchers and stakeholders.6 7 CABs can consist of community members, individuals with lived experiences, decision-makers and/or members of relevant organisations. These boards act to provide a voice to the population being served and to ground the research in community needs. 7 8 Careful development of a CAB is important to support the goals of CBPR. Key considerations include ensuring that recruited community members and organisations represent the population, taking deliberate steps to minimise power imbalances between members and fostering collegial relationships to support collaboration.7
A preliminary search of MEDLINE, the Cochrane Database of Systematic Reviews and JBI Evidence Synthesis was conducted, and no current or underway systematic reviews or scoping reviews on the topic were identified. In 2011, Newman and colleagues7 from the Medical University of Southern California narratively synthesised a collection of best processes for forming, operating and maintaining CABs for CBPR. Newman et al’s synthesis7 was based on literature from 2000 to 2009 and included personal experiences of their research team.7 In the current review, we plan to update the said review by incorporating published and grey literature between 1990 and 2023 in both English and French. The current scoping review is being conducted to inform the CAB structure of the I-CREAte (Innovations for Community Resilience, Equity and Advocacy) team, a CBPR group formed in 2020 to conduct action-oriented research in Kingston, Ontario, Canada and the surrounding region. Specifically, the I-CREAte CAB, which consists of multiple partners and stakeholders including community members with lived experience of overcoming adversity at the individual (adverse childhood experiences) or community level (eg, poverty, racism and community safety) and representatives of various community agencies that serve structurally oppressed groups, have requested this review.
This scoping review aims to map the existing literature on the approaches used to engage people with lived experiences on CABs. We seek to explore the best practices for the recruitment and engagement of people with lived experiences on CABs and to identify the scope of literature on minimising power dynamics between organisations and community members with lived experiences who work on CABs together. Understanding the existing literature and reports related to effective engagement methods and best practices will support the work of CBPR teams, will inform the ability of CABs to engage people with lived experiences and will help CBPR teams to better understand engagement methods.
Methods
This scoping review will follow the scoping review methodological framework outlined by Arksey and O’Malley,9 and informed by Levac et al,10 and Peters et al’s11 recommendations. Arksey and O’Malley9 outlined five stages to the scoping review: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarising, and reporting the results, and Levac et al10 added consultation as the sixth stage.
Stage 1: identifying research questions
This scoping review will explore methods of engaging people with lived experiences relevant to the research subject matter on CABs in CBPR to address the following two research questions:
What is known from existing literature about the engagement of people with lived experiences relevant to the research subject matter on CABs in CBPR since 1990?
What methods are recommended to effectively recruit and engage people with lived experience alongside organisations on CABs in CBPR?
Stage 2: identifying relevant studies
Inclusion and exclusion criteria were developed and described below. Detailed and robust search strategies were developed for multiple bibliographic databases in consultation with an expert medical librarian (SW) using combinations of MeSH terms and keywords. In addition, reference lists of included articles will be searched for additional studies. Final search terms were developed with a librarian (SW) from Bracken Library, Queen’s University. Search terms and concepts are included in online supplemental appendix A.
Supplemental material
The following electronic databases will be searched: Embase, Medline and PsychINFO. A search of the grey literature will be incorporated from websites using Google and Google Scholar, including relevant reports from universities, Canadian organisation and key international organisations (see online supplemental appendix B).
Supplemental material
A PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) diagram will report the number of papers identified at each stage of the review, including those screened with titles and abstracts, those reviewed in full text, and those meeting eligibility criteria and included in the final scoping review.
Stage 3: selection of relevant studies (inclusion and exclusion criteria)
After excluding duplicate studies, two researchers will screen and review all abstracts and titles of retrieved publications and grey literature, based on the inclusion and exclusion criteria. A third reviewer will adjudicate if the two primary reviewers disagree. We will include peer-reviewed studies and grey literature that address the engagement of people with lived experiences on CABs in CBPR since 1990; best practices to effectively recruit and engage people with lived experience on CABs; are published in English or French; and are published between 1 January 1990 and 30 March 2023, as citations of CBPR began to appear in academic literature in 1990. We will exclude studies translated from other languages; studies not related to CBPR; studies focusing on services outside social and health services; and studies including only clinicians, managers, decision-makers or children under the age of 16 years. Studies included at the title and abstract screening stage will be reviewed by two reviewers in full text for inclusion at the next level of screening.
Stage 4: charting the data
For this stage, a data extraction form will be developed to determine the variables to be extracted from the included studies. Key findings will be analysed using a content analysis approach. Key components from data extraction forms will be downloaded into the NVivo software. A codebook will be developed by the research team to guide the coding process. Each researcher will independently code. A random sample of 10 studies will be cross-checked for coding consistency and alignment with the research questions. Thematic coding will be applied in three phases: open coding, axial coding (creating categories) and abstraction. Open coding involves reading and writing notes and headings to describe the main research area for each study. The headings and notes will then be recorded to generate a list of initial codes. The list will then be refined through a cyclical process by combining similar codes into themes (axial coding). During the final abstraction phase and based on semantic and conceptual similarity, themes will be consolidated into major categories and subcategories to answer the two main research questions.
Stage 5: collating, summarising and reporting of results
The data will be presented in a tabular format with a narrative summary discussing how the research findings relate to the research questions. Data will be synthesised using thematic analysis to answer the research questions. Collected data will be recorded from all included studies: (1) author(s), year of publication, study location and language; (2) study design and type; (3) study duration; (4) study populations; (5) aims of the study or report; (6) methodology and (7) key results.
Stage 6: consultation/patient and public involvement
We will include an additional step in the Arksey and O’Malley’s9 methodological frameworks, entitled, ‘consultation’, initially proposed by Levac et al10, which includes incorporating a consultation process with stakeholders. The purpose of this consultation process is to add methodological rigour, learn about additional sources of data and ensure relevance of research results.10 Given this review is being actioned by an ongoing CBPR group, the consultation process will be carried out through its existing CAB members, who recommended that the team studies meaningful engagement of persons with lived experience. During the protocol development, a member of the research team attended a CAB meeting to present the research proposal. This member fielded questions and received feedback, which was integrated into the protocol to ensure adherence with our CAB. Following the recommendations of Levac,10 we will present preliminary findings to validate the findings and gather feedback, perspective and relevance of the findings, both for our work and to inform future research. This consultation process will be presented at CAB meetings where consultation and discussion of preliminary findings from research regularly take place. The process of presenting the preliminary findings from the scoping review in this way aligns with Levac’s10 indication that the consultation process be part of a knowledge transfer and exchange exercise and will allow the group to develop dissemination strategies with other stakeholders, community partners and researchers. While this sixth step is an optional component of the Arksey and O’Malley’s9 methodological framework, it provides the research team with an opportunity to follow existing participatory methods and remain accountable to meaningful engagement of the CAB.
Ethics and dissemination
Formal ethics approval is not required as primary data will not be collected in this study. The results of this study will be disseminated through peer-reviewed publications, conference presentations and workshops, as well as lay language summary reports for key stakeholders, community partners and future knowledge users.
Discussion
This scoping review will contribute to the literature by generating findings that will provide insights regarding the recruitment and engagement of individuals with lived experience and minimising power dynamics between organisations and community members with lived experiences participating in CABs. This detailed protocol, following the Arksey and O’Malley9 framework, is strengthened by the additional step, initially proposed by Levac,10 to increase its applicability for this project and ensure all steps are following a participatory process with stakeholders who are already involved in a consultation process with the research team. This additional step allows stakeholders to share their own lived experience of working with community members, which can contribute to its relevance.
An overview of the topics will be given, identifying gaps in the field of engaging individuals with lived experience on CABs and strategies to mitigate these gaps. In doing so, the I-CREAte CBPR group will contribute to the literature and will also apply these findings to I-CREAte’s CBPR research. Compared with previous research on this topic, this review will contain a sub-analysis of strategies for mitigating power dynamics within CABs.
This review will have several strengths. First, the topics of CBPR and CABs will be addressed in a structured manner as a scoping review, as discussed previously. Bias will be mitigated via dual review at each stage. The review will also have limitations. Despite our efforts to be comprehensive, we may have missed relevant research.
Data availability statement
Data are available upon reasonable request. Not applicable.
Ethics statements
Patient consent for publication
Ethics approval
Not applicable.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @ibayoumi
Contributors All authors have contributed to the intellectual contributions to the development of this protocol. GN, HK, SC-N, IB and BK collaboratively identified the framework and developed the search terms in collaboration with EP. GN and HK developed and tested the search terms and developed the data extraction framework, which was guided and further developed by the experience of EP, IB and BK, who initially conceptualized the review. GN and HK collectively developed the initial manuscript drafts, which were followed by multiple iterations, including substantial input from SC-N on the methodologies and background. All authors reviewed the manuscript drafts. IB supervised the entire process and finalized the manuscript for publication.
Funding This work was supported by the Office of the Principal and Vice-Chancellor and the Department of Family Medicine, Queen‟s University and the Social Sciences and Humanities Research Council of Canada grant number 6034834
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.