Community-Based Participatory Research: Lessons and Challenges. Symposium Special Communication

Abstract

Community-based participatory research (CBPR) is grounded in the commitment of co-creation and co-development of research that is for, by, and with the population it is intended to impact. Translational oral health researchers can harness this research approach when conceptualizing innovations and interventions, especially in those contexts where populations have been made systemically and historically vulnerable. This commentary highlights lessons shared and challenges presented when implementing CBPR, derived from a 2024 IADR/AADOCR/CADR General Session & Exhibition symposium. The presenters shared numerous considerations when planning CBPR, such as integrating an equity lens in research, the necessity of community partnerships and trust-building, and the significance of adopting principles and criteria that are developed by the communities one works with and are therefore relevant and applicable to their particular oral health needs. Additionally, the panel of speakers and symposium attendants discussed ways of ensuring the sustainability of interventions and the integration of worldviews other than that of the researchers into CBPR. Oral health scientists and program implementers working with communities’ interests in mind must be alert of how best to harness CBPR to adequately respect self-determination and governance of all peoples and, in this manner, develop strategies that are adopted and valued by the communities they intend to serve.

Knowledge Transfer Statement:

Community-based participatory research is an equitable and wholesome approach that aims to respectfully collaborate with the communities that it seeks to impact. It offers everyone a seat at the table when trying to create transformative clinical, behavioral, and health services change. Oral health scientists and program implementers can apply this framework for research and programming in communities where past approaches have not necessarily benefited the peoples or their communities in an equitable manner.

Introduction

Within the domain of oral health, a continuous uphill battle exists in collaborative and community-centered initiatives that elevate and broaden its importance, awareness, and implications for overall well-being. If we desire to use research skills to facilitate change, it is important to acknowledge and understand the historical, political, economic, social, cultural, and geographical context of the setting and population with which we are working. This is where community-based participatory research (CBPR) approaches become key for advancing research that is for, by, and with the populations of interest. Oral health can become important in a community’s broad pool of health, social, and economic needs, but we must approach this in a way that allows everyone to be heard and feel included.

Community-based participatory research entails working with members from the communities to facilitate action and change (St. Denis 1992). By working with community members, the power imbalance between the researcher and the participants may begin to be ameliorated, which means researchers must use their social, economic, and political power to work in the interest of community self-determination and control of what is said about them and consequently on what may influence their lives. With the CBPR approach, community perception, guidance, and insight are integral parts of the conception, design, and execution of a project, as well as its data interpretation and dissemination of the results. Such an undertaking oftentimes breaks with “conventional” ways of doing research, especially when it comes to methodological and logistical aspects, which can lead to its own unique set of challenges. Nevertheless, the integration of communities’ input, knowledge, beliefs, wisdom, and lens in research is key if population-based approaches are to positively affect clinical, behavioral, and health services outcomes. The relevance of this approach becomes more evident in groups that have been historically and systemically marginalized, and more must be done to integrate this research framework when working with these populations.

The 2024 IADR/AADOCR/CADR General Session & Exhibition held in New Orleans, Louisiana, in March 2024 brought to life the symposium titled “Community-Based Participatory Research: Lessons & Challenges Ahead,” in which researchers from different geographical locations (throughout the Americas) and stages in their careers shared their experiences and recommendations regarding the undertaking of CBPR approaches. This session was kindly sponsored by the Behavioral, Epidemiologic and Health Services Research Group. The aim of the symposium was to raise awareness and highlight the importance (through lived-experienced research) of the relevant components that need to be integrated into CBPR approaches in populational oral health research. At the core of this undertaking, there was a wish to underscore the importance and benefits of adopting the CBPR approach and how it can lead to amplifying the much-needed intersectionality between different scopes of research and the communities that are directly impacted. The aim of showcasing 3 different research contexts is to stress that CBRP is not a “one-size-fits-all” approach or a box that researchers may simply check off.

This communication serves as a summary of the symposium, as well as a piece for the broader oral health community on which to reflect. This is all in hopes of the possibility of adopting and harnessing the power of CBPR approaches in fulfilling oral health care, research, implementation, and knowledge mobilization in a way that always keeps the end users’ interests in mind at every stage of the process.

Lessons

The first speaker, Alejandra Garcia-Quintana, underlined the importance of CBPR and health equity in addressing health care disparities, particularly in Indigenous communities in Latin America and Venezuela. Through active involvement of community members and integration of culturally specific interventions, initiatives, such as “SONRISAS E’ÑEPA EN VENEZUELA” and “SONRIAS KANAIMO,” seek to enhance oral health outcomes and overall quality of life, reflecting a wider push toward fairer health care access and sustained transformative impact in Indigenous populations in this context. Within this same setting, the need for an intersection of CBPR and a health equity framework was emphasized, as the need to have a shared commitment to addressing health disparities and promoting social justice must be key when working alongside communities (Lucero et al. 2020). One significant takeaway from this session, as articulated by Dr. Garcia-Quintana, was the notion that we must delve into understanding the health problem from the inside out, following the lead of the community and their trustees, by placing in the center of our research question the greater scope of health, including oral health.

In a different South American location and reality, Diego Proaño narrated how the Waynanuna Oral Health Project, conducted in Fray Martin de Porras (Peru), demonstrates the complexity embedded in the process of creating partnerships and the need for reflection to move forward. He emphasized the use of community engagement or partnership frameworks in planning, conducting, and evaluating any oral health intervention to identify areas of improvement. Examples of this included partnering with the local religious organizations, municipalities, and schools. He accentuated the importance of conducting thorough needs assessments prior to commencing any work, as well as implementing a continuous review of all aspects affecting the sustainability of an oral health project. He also added that partnerships need to be considered within the structure of any oral health organization involved in community research. Dr. Proaño also reflected upon the conflicting public health messages when trying to engage with the community, such as providing sugary products during social activities. Additionally, he underscored the reality of what the COVID-19 pandemic brought upon CBPR-led projects like this one, a reality felt across many health fields. Dr. Proaño ended his presentation with the following quote from Freire: “Reflection without action is sheer verbalism, and action without reflection is pure activism—or action for action’s sake” (Freire 1972).

The last speaker, Herenia Lawrence, closed the session by sharing advancements in health research involving Indigenous peoples in Canada by illustrating the significant developments where CBPR is concerned. There was a special emphasis within this conversation about the frameworks, principles, and guidelines for ethical academic research involving Indigenous communities or peoples that have been developed and revised over many years. Specifically, the First Nations’ Principles of Ownership, Control, Access, and Possession (OCAP®) were highlighted as a means by which First Nations groups in Canada are charting a path to data sovereignty that aligns with their worldviews, traditional knowledge, and protocols (https://fnigc.ca/ocap-training/). Other Indigenous groups have their own set of guidelines, principles, and values that inform research in their communities. For example, the speaker considered one of the most significant advancements in CBPR to be the proliferation of First Nations–based research ethics review committees/boards (REBs) for upholding culturally grounded ethical principles and Indigenous self-determination in the processes, methods, and knowledge mobilization for research being done in their communities. The Consolidated Criteria for Strengthening Reporting of Health Research Involving Indigenous Peoples (the CONSIDER statement) was also described, as it not only provides a reporting checklist, addressing Indigenous research governance, prioritization, relationships, methodologies, participation, capacity building, data analysis, and interpretation, as well as knowledge dissemination, but also acts as a reminder for researchers to be aware and respectful of Indigenous culture and ways of knowing (Huria et al. 2019).

With community participation being the central component of the CBPR framework, Dr. Lawrence also addressed new avenues of research that consist of co-constructing oral health interventions with Indigenous partners, interventions that are solidly grounded in Indigenous people’s strengths and successes that are countering years of Eurocentric research methodologies. This approach involves incorporating traditional and cultural knowledge and practices that have worked for millennia into oral health interventions for young Indigenous children in Canada, including swaddling, breastfeeding, country food, traditional medicine, and storytelling, albeit via digital storytelling (Lee et al. 2022).

Challenges

As part of the general discussion through audience questions, as well as a short panel with the speakers, interesting issues arose and sparked a conversation about using CBPR approaches in oral health. One aspect discussed was related to sustainability, especially in projects where the researchers do not live in the community. The panelists discussed that a big challenge in carrying out CBPR relates to the projects’ sustainability, as funding, political and structural changes, staff turnover, communities’ complex and changing needs, prioritizations, and interests are all determinants in the success (or not) of sustaining interventions within the CBPR approach. It was remarked that having community “champions” is key for projects and interests to be sustained. It was mentioned that these facilitators could be in the form of community research coordinators and/or trainees. Additional forms of enhancing sustainably include adequate mobilization and penetration of the projects in the local health system/structure, constant and iterative evaluation of factors that can guide sustainability, and reciprocity with community partners at every step to establish trust and continued interest from the communities with which one works.

An additional discussion point that was emphasized as part of the broader conversation related to moving away from the “Western” way of doing research, especially in relation to Indigenous communities. This point was discussed and conceptualized with the panelists as not so much of a need but a requirement, especially if one is an “outsider” to the community and wishes to work in a respectful manner. Indigenous self-determination in research can be driven in the form of the mentioned principles (OCAP®), community-based research and ethics boards, and research reporting guidelines (e.g., CONSIDER). The examples presented in the symposium are derived from populational groups that have had the opportunity to develop and disseminate these community-led standards, but more must be done to facilitate the creation of these guidelines in communities across the globe. Adopting culturally specific research methods and methodologies that are not “conventional” or broadly described in standard quantitative and qualitative research literature is another way to approach this matter. As part of a broad international research community, we must understand that other worldviews are valid and must be empowered. This topic is closely intertwined with sustainability because if we, as researchers or program planners/implementers, intend for our interventions and innovations to be upheld, we must understand that communities need to be involved in co-creating them in a way that reflects their interests and values.

Final Remarks

While CBPR comes with its own set of challenges, if done well, it has the power to facilitate change. To conclude, we present some questions developed from the lessons learned in the symposium that researchers embarking on CBPR might consider:

• Has my team taken the appropriate steps to learn about the historical and contemporary context of the population I plan to work with, beyond those solely concerned with oral health?

• Has my team taken the time to get to know members of the community, meet with community leaders, and engage in trust-building to work in a truly collaborative manner?

• Whose point of view is prioritized in the conceptualization of the project?

• Will the project drive health equity or exacerbate stigma or stereotypes of the population?

• What will happen in the community in relation to the project once the research team has returned to their home institution?

We hope that this communication is as enriching for readers as the journey has been for the authors and participants in the symposium. We believe that change in community-based participatory oral health research is possible; we just need to broaden our horizons and listen to the members of the communities we serve.

Author Contributions

F. Arriola-Pacheco, A. Garcia-Quintana, H.P. Lawrence, contributed to conception, design, data acquisition and interpretation, drafted and critically revised the manuscript; A. Ness, contributed to conception, design, data acquisition and interpretation, drafted and critically revised the manuscript; K. Sihuay-Torres, contributed to conception, design, data acquisition, critically revised the manuscript; D. Proaño, contributed to data acquisition and interpretation, drafted and critically revised the manuscript. All authors have their final approval and agree to be accountable for all aspects of work.