Community-Partnered Research appraisal tool for conducting, reporting and assessing community-based research

Introduction

Driven by social movements to include marginalised and vulnerable voices in the scientific processes since the 1940s, models of public involvement, engagement and participation in scientific research emerged across disciplines in hopes of challenging the traditional, unidirectional, top-down practice in research and shifting the relationship between science and society towards a more integrated ‘science in society’ approach.1 2 This ‘participatory turn’ became a collective response among professional researchers and communities seeking to address the ongoing colonisation of science. Engaging the public as co-researchers promoted the vision of democratising science by redefining hierarchical power relations between the researcher and those they researched to reduce health disparities and inequities, improve population health management and public health initiatives, and collaboratively change the healthcare continuum in communities (To practice inclusivity and balance positionality through language, ‘community co-researchers’ will be used to acknowledge the variety of involvement community members may participate in when contributing to the scientific inquiry process).1 3–7

Common community-based frameworks range from contractual models, where communities request professional researchers to conduct specific scientific investigations; collaborative models, where experienced researchers generally design the study while community stakeholders support the design and implementation of the project by contributing their ‘community voice’ at various points of the scientific inquiry; to co-created projects, where professional researchers and community co-researchers partner at all stages of the research lifecycle and co-design research questions driven by community needs, co-learn and build local capacity, and co-create knowledge that has a transformative impact in communities and address real-world problems.1 8–16

Although these models of public participation in scientific research have made substantial scientific contributions in many fields, current standards for conducting traditional research involving human subjects are seen as an ‘imperfect fit’ for community-based research due to each partnership’s unique nature and variation.1 3 9 17 18 (Given its widespread use and recognition, the term ‘community-based research’ will function as an all-encompassing terminology to represent the extensive breadth of models using public participation in the scientific inquiry process.) For that reason, public and private organisations and associations worldwide have discussed and determined principles and guidelines for community-based research. Examples of prominent resources in this area include the ‘Principles and Guidelines for Community-University Research Partnerships’, developed by a committee of academic professionals at the Yale Center for Clinical Investigation to reflect an ideal community-university research partnership.19 Another guide known as ‘Community-Based Participatory Research: A guide to ethical principles and practices’ emerged from a research project in the UK, primarily focusing on the lessons learnt by those involved to ensure ethical research conduct when using unique approaches that reveal insights into the lived experiences of communities.20 Subsequent guidelines continued to build on prior work and produced the ‘Participatory Health Research: A guide to ethical principles and practice’.21 Additionally, other professional associations created standards representing their belief in what underlies best practices in community-based research, such as the ‘Ten Principles of Citizen Science’.22 Presently, workshops and think tanks like those hosted by the US National Institutes of Health facilitated discussions to identify and explore the ethical, legal and social implications associated with citizen science research in hopes of eventually establishing criteria and guidance for community-based research.23

However, such principles and guidelines stop short of providing tools for reporting requirements of findings and assessing the quality of existing evidence, thus resulting in suboptimal reports and reviews of community-based research that fail to produce robust, usable and reproducible knowledge for academic and non-academic communities alike.24 Furthermore, there is often a lack of accuracy, clarity and transparency in scientific reporting about how professional researchers and community co-researchers partner and collaborate when conducting community-based research, leading to discrepancies in the variety of methods that are referred to as community-based and risking dilution of the core tenets that characterise community-based research. The current state of the science in community-based research reveals a critical need for an explicit methodology to improve the quality of conducting, reporting and assessing community-based research and uphold researcher responsibilities, protection of participants, and scientific rigour. In this paper, we introduce prospective and retrospective systematic guidelines and a supplemental checklist known as the Community-Partnered Research (CPR) appraisal tool to promote clear, accurate and transparent standards and consistency when conducting, reporting and assessing community-based research while minimising the influence of bias, power and privilege within and across studies.

ResultsAim and scope of CPR appraisal tool

After a series of iterative revisions, the final CPR appraisal tool emerged into three products: an elaborate prospective format, a basic retrospective format and a supplemental checklist format. All three versions of the CPR appraisal tool consist of the main 11 question items aimed to facilitate awareness, accountability and transparency about processes and practices employed by professional researchers and community co-researchers throughout four phases of research: (1) partnership and planning, (2) methods, (3) results and (4) sustainment. The three versions of the CPR appraisal tool are designed to serve distinct purposes:

The elaborate prospective CPR appraisal tool is intended to act as an in-depth, practical guide for new and existing academic-community partnerships to use when preparing, planning and conducting research as it explains the meaning of each question item and its corresponding prompts. For instance, the READU team used the elaborate prospective CPR appraisal tool to descriptively guide their discussion about their partnership model. Each question item and its corresponding prompts enabled the READU team members to reflect personally and relationally on how things were done in the past and how they could improve their partnership for future projects. The elaborate prospective CPR appraisal tool can be found in online supplemental appendix 1.

The basic retrospective CPR appraisal tool is intended to be more user-friendly, with concise corresponding prompts, to serve as a systematic guide to ensure that information is descriptively and accurately reported or appraised. When reporting the results of a study, a community-based research team may opt to describe how each question item and corresponding prompts are met either throughout the article itself or in the space provided in the retrospective CPR appraisal tool. For critical appraisal, external reviewers may use the question items and corresponding prompts as an analytical method for evaluating the trustworthiness, value and relevance of the processes and results reported in community-based studies. Then, the completed tool can be referenced or linked to the main article and uploaded as an appendix or supplementary file for publication submission. The basic retrospective CPR appraisal tool can be found in online supplemental appendix 2.

The CPR supplemental checklist was designed to serve two purposes after using the prospective or retrospective CPR appraisal tool: (1) for transparency, much the same way existing checklists78–82 are used at the time of article submission to designate the location(s) of each reported item in the manuscript, and (2) for quality assessment purposes, where reviewers or those extrapolating evidence from community-based research studies can record the extent to which studies have incorporated essential elements of partnership based on the question items and corresponding prompts and provide the completed supplemental checklist as an appendix, supplementary file or results table.

When using the CPR supplemental checklist to transparently report the presence or absence of community partnership throughout each phase of the research, we recommend applying ‘Not applicable’ (N/A) under the ‘Reviewer’s rating’ and identifying the page number(s) where each question item and corresponding prompt are described in the manuscript under the ‘Item’s location’ column. When using the CPR supplemental checklist to critically appraise the elements of partnership in a study, we recommend completing both the ‘Reviewer’s rating’ and ‘Item’s location’ columns. Reviewers can rate each question item as ‘Yes’, ‘No’, ‘Unclear’, or ‘Not applicable’ and record observations and reasons for ratings in the spaces provided. It is recommended that the rating be discussed by all members involved in the critical appraisal process to develop a shared understanding of the study. The CPR supplemental checklist can be seen in table 1.

Table 1

The CPR supplemental checklist for reporting community partnership or critical appraisal

Of note, the question items and corresponding prompts were intentionally structured with compound conditions that should be fully met for the reviewer to rate the entire item as a ‘Yes’. For example, in the Methods phase, question item 4 states, ‘Did the study design align with the nature of the research question(s) and meet the needs of the community of interest’? Disregarding either condition, (1) the study design aligning with the research question or (2) meeting the needs of the community interest, may signify a need to critically re-examine and adjust the foundational elements that constitute a mutual partnership between professional researchers and community co-researchers. Since the scope of the CPR appraisal tool primarily focuses on the nature of partnership and co-creation of knowledge in community-based research, it is recommended to use the CPR appraisal tool with other study design-specific tools83 84 when conducting quality assessment to ensure balanced alignment between methodological rigour and the needs of the community of interest.

Discussion

Discrepancies in how community-based research methods are used, reported and assessed threaten to impede the forward movement of integrating knowledge and action that benefit communities, democratise science and bring social change.1 8–16 Therefore, the CPR appraisal tool was designed to reflect the current community-based research literature as well as the needs and experiences of research partners. The systematic application of this tool may assist in increasing awareness, transparency and accountability among professional researchers, community co-researchers and other scientific community members. Furthermore, conducting explicit, methodical and accurate reporting and assessment of community-based research can encourage more effective critiques and peer review processes. The collective approach in strengthening the rigour and quality of reliable knowledge85 generated by community-based research can help reduce the gaps between theory, research and action to address social, structural and environmental inequities7 and create sustainable solutions to improve community health endeavours.9 44 Although the CPR appraisal tool has the potential to facilitate a paradigm shift in how community-based research is conducted, reported and assessed, fundamental changes must start with accurate and transparent reporting to improve the reliability, utility and impact of public participation in science and communities.86

To our knowledge, only one systematic review has been completed to evaluate the quality of published studies using community-based research methods.87 Although included studies reported improvements in recruitment, research methods, dissemination and other outcomes, information about partnership development and collaboration among professional researchers and community co-researchers was typically condensed into a few words or completely missing.87 Such publications with minimal transparency of how community-based research is conducted persist and contradict existing guidelines on writing manuscripts about community-based research for peer-reviewed journals.88 This lack of transparency is likely due to limitations related to funding and page length of most peer-reviewed journals that restrain the descriptive writing needed to thoroughly situate the range and depth of agreements and relationships established among all partners throughout the research lifecycle of co-designing, co-learning and co-creating knowledge.87 Changing these norms is critical because how information is shared and withheld can influence power dynamics at the individual and structural levels, specifically diminishing the capacity of individuals to maintain autonomy, self-determination89 and their trust in science and scientific institutions.90 These existing norms can force those partnered in community-based research into a conundrum of navigating between traditional ways of reporting on their scientific work that may potentially mute the voices of communities they included in their projects,91 92 and reporting in an authentic way that is seen as not normative may challenge scientific convention or be viewed as less rigorous. We hope that the CPR appraisal tool can help mitigate this challenging position so that community-based research can continue to refine the principles, methods and practices of co-created knowledge. In doing so, the commitment to building and maintaining equitable and trustworthy partnerships has shown to contribute a ripple effect of longitudinal outcomes, including partnership longevity, spin-off projects and systematic transformations that manifest as cultural shifts, implementation of evidence-informed policies, and advancements in health equity.44

The widespread application of the CPR appraisal tool has several future implications. For instance, following the recommended guidelines of the CPR appraisal tool may increase investment and commitment in the project and relationships, increase clarity about roles and responsibilities, and help articulate a shared vision and goal during the partnership and planning phase when conducting community-based research. Furthermore, similar to the endorsement of other recommended guidelines, using the CPR appraisal tool may increase the word count and length of manuscripts and review reports while conversely improving the clarity, transparency and completeness of community-based research publications,78–82 strengthening the systematic evaluation of research evidence,93–95 and encouraging more authentic and trustworthy partnership among all parties involved in community-based research.54 96 97 However, due to the current state of community-based research publications, appraisals from external reviewers may initially have trouble identifying all the items in the retrospective CPR appraisal tool. So, we implore readers and future users of the tool to approach the new standards of community-based research with patience, persistence and pragmatic adaptation as we dynamically and reciprocally interact and adapt into a more integrated, transparent and rigorous ‘science in society’.2

The development of the CPR appraisal tool benefited from a wealth of prior data published in studies using community-based methods from many different geographical and cultural contexts, thus representing the widespread utilisation of community-based research across diverse populations. However, limitations to the current tool include the adaptation of question items and corresponding prompts from included papers, which was mediated through the positionality of the researchers, authors, peer reviewers, and AP and JvD. While the abductive and reflexive processes increased the appropriateness and refinement of the included empirical elements and relations, they were altered to an extent each time76 and would be challenging to replicate identically. Another limitation that impacted the scope of the current tool was the constraints of the literature review. Although interventions/clinical trials were not intentionally excluded from the literature review, the identified source documents were predominately observational studies, thus biasing the development and limiting the utility of the CPR appraisal tool towards specific study designs. Nevertheless, situational and relational maps are a widely used process where the element and relations are designed to be loosely bound and ever-changing,98 enabling the CPR appraisal tool to continue to evolve alongside the expansion and refinement of community-based research approaches and publications. Lastly, the relevancy and application of the CPR appraisal tool in other contexts and communities may also be limited as it reflects the current literature and the needs and lived experiences of the community-based research team who offered feedback and pilot testing. However, the CPR appraisal tool is expected to be transferrable and promote further exploration and reflection for other situations of inquiry.

To facilitate wider dissemination and uptake of this innovative tool in the scientific community, we encourage endorsement and widespread utilisation of the CPR appraisal tool by those participating in, assessing and publishing community-based research. Our team plans to follow the post-publication activities indicated by current recommendations for developing and disseminating reporting guidelines.24 We hope to present the CPR appraisal tool in various formats and translations to accommodate our audiences’ varying needs for and responses to scientific information.99 By doing so, we invite community-based research teams, external reviewers and community members to provide feedback and constructive criticism about the CPR appraisal tool.100 In this open dialogue, we will suggest refinement or revision, as appropriate, to the question items, prompts and guidelines of the CPR appraisal tool to align with evolving community-based research best practices. In addition, we also aim to evaluate the impact of the prospective and retrospective CPR appraisal tool as well as the CPR supplemental checklist in future research projects. For example, we plan to subsequently test the utility, usability and user experience of the retrospective CPR appraisal tool by recruiting community-based research teams across disciplines. We hope introducing the CPR appraisal tool can function to bring together professional researchers and community co-researchers as partnered explorers97 with a shared explicit language96 101 102 who co-learn, co-design and co-create robust, usable and reproducible knowledge that propels community-based research forward towards social, structural and environmental equity and sustainability for individual, family and population health.

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