Reflecting on the Backstage and Frontstage of Community-Based Participatory Research: Ethics and Collaboration in the CATALYST Study

Community-Based Participatory Research

Community-based participatory research (CBPR) is an effective and increasingly applied approach to conduct research in partnership with populations and communities historically excluded from access to health-promoting opportunities and resources (Israel, 2013; Wallerstein et al., 2018). Benefits of CBPR for health equity are well documented, including: research topics and questions are congruent with community priorities; research processes (e.g., collaborative approaches, methods) align with culturally-centered norms, values, and practices; research findings are applicable to local contexts and have greater potential to inform action; community and academic partners strengthen skills and knowledge through co-learning; and the strengthening and/or sustainability of collaborative relationships (Brush et al., 2020; Duran et al., 2019; Hanza, 2021; Jagosh et al., 2015; Plumb et al., 2008; Viswanathan et al., 2004). CBPR approaches also strengthen science by enhancing the research’s relevance, rigor, and reach by forging community-academic collaborations that co-create knowledge and understanding (Balazs & Morello-Frosch, 2013). CBPR approaches are critical to ensuring that research approaches can fully expound on the significance of lived experience in ways that prove transformative for hierarchical researcher-participant power dynamics (e.g., narrow research questions that may overlook complex individual and community assets and dynamics).

Nonetheless, previous research has examined and noted tensions between community-driven methodologies and the biomedical or individual-level frameworks that academic oversight processes, such as institutional review boards (IRB), often reify (Brown et al., 2010, 2010, 2010; Flicker et al., 2007; Onakomaiya et al., 2023). These processes, while essential for shaping who participates in research and how rigor and representation are ensured, are often disconnected from day-to-day research activities. This leaves community partners with limited visibility into how these systems work. At the same time, university-based investigators often lack clarity on how to navigate institutional processes to ensure adherence to ethical and fiscal processes while meeting urgent community priorities and supporting ethical inclusion of community participants. Community partners’ understanding of and participation in all stages of the research process is vital for conducting ethical and methodologically sound research. Building this deeper understanding of and meaningful participation into these research processes is further challenged by academic partners and influences outside the core team (e.g., IRB, funders) that may overlook the power dynamics embedded within and opportunities to partner with communities to navigate IRB and academic institutional processes.

Theoretical Framework: Goffman’s Backstage/Frontstage

To better understand hidden tensions and negotiations, we draw on Goffman’s self-presentation theory and the theatrical metaphor of “backstage” and “frontstage” (Goffman, 2023). We apply this theory, which uses a dramaturgy framework, to the context of CBPR to highlight how different stages of participatory processes are informed by both: the frontstage, or what is formally visible (e.g. IRB protocols, consent forms, and recruitment, research findings) and the backstage, or less visible, behind-the-scenes work required to build trust, adapt processes, and meet community needs and priorities in real time (e.g. negotiations, trust-building conversations, shifting strategies). Goffman’s theory explains how people manage impressions by separating what is shown publicly from what happens privately to prepare and negotiate those performances. Other studies have used this dramaturgical metaphor to describe how backstage processes in healthcare can affect and improve patient experience in the frontstage (Ramsey et al., 2023; Steele Gray et al., 2024).

In this paper, we describe the blending of backstage and frontstage processes within a community-academic partnership to support ethical and equitable inclusion of community-based researchers and participants into a qualitative CBPR study of Community Health Workers’ (CHW) roles and experiences during the COVID-19 pandemic. We examine how front and backstage dynamics emerged in the design and execution of key aspects of the study which often warrant critical reflection and collective negotiation within CBPR, centering community priorities and concerns: partnership formation, the informed consent process, outreach and recruitment, lowering barriers to study participation, and authentic partnership between community-based and university-based researchers. For each aspect, we discuss challenges related to imperfect interfaces between the university, community, and the extramural funder. We describe how we responded to these challenges through collaborative strategies, and share lessons learnt. We present these reflections to propose opportunities for early discussions and actions around research budgets, timelines, agreements, research ethics training and other processes that may clarify and strengthen interfaces between community and institutional partners to advance their research objectives in ethical, fiscally responsible, equitable, and inclusive ways. Applying Goffman’s frontstage–backstage lens to CBPR ethics helps reveal the continuous relational work that complements formal institutional processes and shape research processes that participants experience but often remains undocumented.

Setting and Partnership

The partnership process and research activities were based in Orange County, California, USA during the COVID-19 pandemic. Reflecting national trends, Orange County experienced substantial racial/ethnic inequities in COVID-19 incidence and mortality (Bruckner et al., 2021; Yamaki et al., 2021). Vocal and mobilized anti-government campaigns against public health COVID-19 mitigation efforts hindered health department efforts to implement equitable COVID-19 mitigation strategies (Fry & Money, 2020). Accordingly, we formed a community-academic partnership to bring together health equity practitioners and scholars to raise awareness of the need for and guide equitable local COVID-19 responses and recovery efforts.

The Community Activation to Transform Local Systems (CATALYST) Study, from which this study is based, emerged from this community-academic partnership (LeBrón et al., 2024). The study is part of the RADx-UP national consortium of 144 research teams who increased the participation of underserved populations in innovative strategies to improve access to COVID-19 technologies (e.g., testing, vaccinations). The CATALYST partnership and study involves a subset of members of the founding COVID-19 partnership.

Collaborative Data Collection & Analytic Process

Between 2021-2024, our partnership worked closely on the CATALYST study and other interconnected research and action efforts. Study protocols were approved by the IRB in 2020 (University of California IRB 1272). The CATALYST study applied qualitative research methods to better understand the health equity efforts of CHWs during the pandemic from the perspectives of local institutional representatives and policymakers, CHWs, and residents whom CHWs accompanied during the pandemic. The team connected with a total of 124 participants (interviews: n = 51; focus groups: n = 73).

This paper draws on the authors’ (representatives of the community-academic partnership) collective critical reflections and shared documentation generated through the CATALYST study’s collaborative processes. Since partners contributed their reflections as co-authors and active participants in interpreting and presenting these reflections, no additional ethics approval was required.

Data for this paper comes from two main sources: (1) a synthesis of the topics raised and strategies devised from large group meetings (held monthly over the study period, with 3-5 faculty members, 1-2 academic project staff, and 4-7 community partners) as well as ad hoc partnership meetings and discussions, and (2) continued critical reflections across community and academic partners after the formal end of the study, as many remain in close communication and collaboration as we continue to analyze findings and collaborate on local health equity initiatives.

Two researchers conducted thematic analysis (Saunders et al., 2023) of the data sources. They reviewed the documentation to identify themes relating to research engagement and partnership dynamics. Themes and insights were discussed collaboratively with co-authors, including community partners, through discussions and written feedback to refine the themes and lessons learnt. This iterative process ensured the analysis reflected shared critical reflections.

Partnership Formation and Study Development

While our community-academic partnership formed out of a shared drive to address inequities during the COVID-19 pandemic, partnership members had to engage in many backstage conversations and negotiations to manage objective-setting, develop a common understanding of purpose to pursue a large grant together, and collaborate on a multi-year project with multiple frontstage expectations.

The urgency and disproportionate impacts of the COVID-19 pandemic accelerated the timeframe to act decisively and quickly to build the partnership, openly share our backstages (community, academic, partnership), and develop processes to move together in support of community priorities in the frontstage. Researchers and community partners alike had to navigate rapidly changing risks and public health guidance, along with new ethical considerations related to safety, trust, and inclusion.

In the backstage, the partnership pooled the resources and expertise everyone could offer and worked to uncover how to work towards a common purpose meaningful within both academic and community value sets and supported with enough resources. Partnership members were deeply embedded in local COVID-19 response efforts that elevated dynamic community concerns, appropriate mitigation strategies, and critical reflections on the role of researchers in addressing local priorities, which they brought to the partnership’s shared backstage. These spaces provided opportunities for academic and community researchers to access each other’s backstage. This enabled academic partners to move beyond traditional university settings and work in spaces where insights were gathered and shared to better understand the community and their respective plurality of backstages. This insight was accessible through the community partners’ backstages, wherein their unique and essential power in community connection and outreach is best understood.

Simultaneously, community researchers gained access into the academic backstage, supporting a better comprehension of university academic processes. Partnership members reflected on these considerations in formal and informal collaboration spaces where we sought guidance from the partnership’s previous experiences and community expertise. Ultimately, the partnership collaborated on the CATALYST study, responding to community partners’ identification of the importance of studying CHW models that communities innovated upon to accompany residents to address the significant unmet needs of low-income communities, immigrant communities, and communities of color that were worsened by the pandemic and inadequate institutional responses.

During the funded study period, we held backstage monthly partnership meetings to strengthen relationships, oversee the research process, collectively interpret emerging findings, and reflect upon the larger implications of our collaborative efforts for building power to transform conditions that contribute to health inequities. Our partnership also connected regularly across other local initiatives during and after the funding period. Additionally, to create space for in-depth discussions on key elements of our research approach and activities, we held ad hoc small group or one-on-one meetings between community and academic partners.

Aligning with CBPR principles, we ensured that all bilingual meetings offered simultaneous language interpretation and translated meeting material to promote language justice and equitable participation. When all meeting participants were fluent in the same language, meetings were held in that language. When appropriate, we communicated ad-hoc by phone to incorporate each perspective into collective decision-making (e.g., in cases where partners were not available to participate in large-group meetings, or for time-sensitive decisions that were necessary between formal meetings). These meetings and touchpoints fostered thoughtful conceptualization, critical reflection, and brainstorming to inform decisions about our research model (e.g., design a community scientist/researcher approach), practical research activities (e.g., recruitment strategy), interpreting complex emerging findings, considering implications for policy, and co-authorship processes.

Navigating Informed Consent

Truly achieving informed consent continues to be a concern in CBPR. We describe how our team navigated informed consent by unpacking the backstage processes of trust-building and negotiation and the resulting frontstage practices that enabled more ethical consent and participation.

Through partnership conversations and lessons from previous collaborations, the team recognized that traditional research consent processes alone do not guarantee authentic understanding. In ongoing discussions, community partners emphasized the importance of community members truly understanding the value of participating in research. Leveraging their lived experience, CHWs identified barriers posed by established IRB processes, including complex wording, lengthy documents, concerns about sharing personal information, limited attention to literacy levels, technological challenges, and language. Furthermore, CHWs noted that informed consent is the outcome of an involved process of building trust in the backstage, through multiple relationship-based interactions, aligning with CHW models of accompaniment. CHWs played a crucial backstage role by co-developing with academic partners the recruitment and consent materials, pushing back on initial drafts, and preparing prospective participants for what to expect – or providing dramaturgical direction. While this process took some time, this preparation ensured community members (i.e. prospective participants) were ready for frontstage decision-making (e.g., deciding whether the study was appropriate to participate in) and participation in data collection activities (e.g., interviews, focus groups).

Academic partners also leveraged their institutional access to advocate for a waiver of written consent from the university IRB, replacing signed forms (which link identities to data) with verbal consent using a clear information sheet, drafted with community partner’s input and tested by CHWs. Recognizing that even though the study information sheet was written in plain and accessible language as much as possible, it was lengthy and required mandatory language from the IRB and the study funder. Therefore, to ensure we met participants across communication and learning styles and literacy levels and to humanize the research project, the team co-created a study information video (available in English and Spanish) with input from community and academic health literacy experts and CHWs, to complement the consent process. The team prioritized clear narration, visuals, and culturally relevant language to ensure the video was accessible and trustworthy. A participant noted that this process gave them confidence that they understood the details of the study information sheet more completely than they might have without the support of the video. This process involved a reciprocal approach in which by making information more accessible for community members, the partnership sharpened the use of plain language, potentially increasing the diversity of participants. Additionally, this collaborative process of developing strategies to effectively convey the research questions, participation details, risks, benefits, and protections surfaced logistics and process questions that we worked out in the protocol. For example, in explaining our data security protocols, we discussed potential participant concerns and best practices in data security, which in turn improved our standard operating procedure for data security. Learning from backstage discussions about overcoming technological barriers, the team shared the video through both email and text messages and at multiple points (e.g., initial recruitment communication, communication in preparation for the interview or focus group). Nonetheless, the process was prescriptive, constrained by IRB requirements, and the supplemental information (e.g., video) relied on the use of technology, raising the need for continued efforts to make informed consent more available.

Community partners also brought forward hidden risks falling outside the IRB scope, which the academic team alone might not have been privy to, including economic instabilities, social polarization and threats (e.g., political divides, sensitive personal disclosures, stigma, or harassment) and other inequities affecting participants’ lives. Backstage discussions helped the team explicitly consider these layered risks, given the multiple contexts participants may be navigating. For example, during COVID-19 surges and uncertainties, the risks of in-person qualitative data collection -- where researchers and study participants engage in direct, in-person interactions for a prolonged period – extended beyond COVID-19 exposure alone. Low-wage workers faced job insecurity if needing to isolate due to potential exposures from in-person research participation. In response, the team identified the need to provide COVID-19 supplies for participants to use before, during, and after data collection events, including rapid tests, protective face masks, and tests to take home to test for any potential exposure, and worked within institutional and funding constraints to advocate for and obtain these. Additionally, we offered the opportunity to participate in interviews or focus groups remotely and considered the current level of COVID-19 transmission in the community when planning in-person research activities. Nonetheless, there are risks that our team could not accommodate (e.g., losing your job if you miss workdays due to COVID-19 exposure). This raises the point that under some conditions, participating in research itself may be risky (e.g., leaving home) and there is a need to explicitly consider and convey risks of participation beyond the narrow scope of the research methods. Currently, participating in research may have other risks, such as concern about data security and safety and unity of immigrant families and communities given turbulent shifts in research and immigration policies and practices in the United States. Our backstage process of considering COVID-19 risks and concerns and strategies to cope with these risks may provide a model for collectively considering, addressing, and refining strategies to mitigate or overcome persistent and emergent risks of research participation.

At the same time, the research team grappled with IRB requirements demanding explicit details upfront, which can limit CBPR’s strength as a flexible, responsive approach. For example, our partnership identified secondary research questions mid-study, informed by the emerging themes from data collection (e.g., mental health impacts, CHW strategies). While approaches such as flexible coding (Deterding & Waters, 2021; Michelen et al., 2024) enable the analysis of inductive codes and themes, these emerging concepts may not have been explicitly mentioned during the consent process. This required careful backstage preparation to ensure that the language used to describe the purpose of the research and research activities stayed clear and inclusive of an inductive analytic approach as we sought authentic informed consent.

This process has underscored the need to critically examine how consent is presented, interpreted, and truly understood – by both the research team and potential participants; as well as consideration of a wider set of risks, vulnerabilities, and protections than are usually acknowledged in informed consent processes. Ethical concerns should be an iterative and ongoing process, where the IRB is not a governing body, but a participant in backstage discussions and responsive to community contexts (Cross et al., 2015). Co-creating tools, rehearsing solutions, and adapting to real-world risks turned the consent process into an ongoing, participant-centered dialogue, showing how careful backstage preparation made an authentic frontstage experience possible. This demonstrates how backstage relationship-building directly shaped a more ethical and responsive frontstage consent process.

Co-Designing Outreach and Recruitment

Our recruitment and outreach processes illustrate how behind-the-scenes relationships and community insights directly shaped the visible ways we connected with participants and invited them into the study amidst the COVID-19 pandemic challenges.

During formal and ad hoc collaborative discussions, community partners elevated community fears and the burden that potential participants were facing, helping academic researchers to understand the backstages that others were navigating during times where in-person connection was more limited and people and institutions had multiple competing priorities due to increased community needs and limited and overworked staff. Further, community partners raised the need to minimize the potential impacts of power dynamics in recruitment (e.g., recruiting members of the same communities and organizations with whom we work) and prioritizing community preferences.

To ensure our study centered community, the partnership worked closely to co-develop and implement a recruitment plan and discussed the recruitment plan in regular partnership meetings. This involved co-developing the recruitment methods (call, email, in-person), language of recruitment activities, recruitment tools (videos, flyers), and recruitment process (e.g. number of follow-ups, incentive amounts and formats). Lastly, we were open to discussing and processing recruitment challenges as they emerged. For example, we widened our sampling approach to include snowball sampling, such as when a participant suggested additional potential participants.

Using insights from the backstage, we tailored the recruitment plan to the different recruitment group goals. These backstage conversations led us to adapt recruitment strategy and messages, shift venues, and train academic staff on community-centered engagement. For example, for recruiting policymakers and other institutional representatives, community partners nominated institutional representatives and policymakers within their networks given that those individuals were highly likely to be familiar with CHW models during the pandemic. Community partners elevated a need to tailor the approach, with CBOs first reaching out to nominees and introducing the project and the academic research team who conducted interviews with this segment of participants. While the recruitment of institutional representatives and policymakers was informed by relationships, efforts to recruit CHWs were informed by careful consideration of power dynamics between CBOs who nominated (and potentially employed or trained) CHWs. Community partners provided the academic team with a list of CHWs in their network to invite to participate, aiming to prevent CHWs from feeling obligated to participate due to workplace pressures. Similarly, to recruit community residents, CHWs noted they should not reach out directly to their own clients, and instead they suggested that CHWs work within their networks to recruit residents for whom they had not provided direct services and support.

These backstage insights informed the frontstage strategies that made participation possible for groups often overlooked by standard recruitment. The team used this tailored approach, based on community partner recommendations, to help ensure attention to the context of recruitment, being sensitive to power dynamics and the relationship building and sustainability that goes on backstage for many CBOs and CHWs.

A key takeaway from this process is the importance of valuing collective reflection and decision-making for each element (micro and macro) of the research process in the backstage. The partnership prioritized collaborative decision-making as challenges arose. For these processes to work, it is imperative to strengthen trust and participation through partnerships with CBOs, CHWs, and academics to ensure culturally congruent and structurally sensitive approaches. The authentic and equitable participation of CHWs and community-based research team members into each phase of the research process holds promise for implementing research processes that facilitate recruitment in trusted spaces and foster relationships. Together, these actions highlight how equitable recruitment in CBPR requires active backstage engagement to design frontstage practices that are credible, accessible, and community-centered, shaping who feels welcomed and able to participate.

Facilitating Direct Participation in Qualitative Methods

Qualitative data collection requires time and trust-building, making it essential to foster authentic connections with participants. Recognizing that participation in research can be inaccessible for many community members, we relied on our partnership’s backstage insights to design supports to make participation more feasible in the frontstage.

Backstage conversations within the partnership revealed that many community members faced significant and interconnected challenges linked with structural inequities, including financial strain, transportation barriers, food insecurity, complex health concerns, and caregiving responsibilities. CHWs elevated that addressing these barriers was crucial to enabling participants to engage in our data collection and community engagement events and contribute to the research process.

The team worked together to identify and develop community-centered solutions to create conditions for the opportunity to participate in research activities. These included developing and strengthening relationships with local community centers, caregiving cooperatives, food providers, among others, that could support in enabling these solutions. These efforts reflected intentional, behind-the-scenes work to expand supportive local networks to enable community members to feel more comfortable and supported in the frontstage.

Data collection was scheduled at convenient times, including evenings and weekends, to accommodate participants’ work and personal or home responsibilities. Meetings were held at trusted community-based locations (e.g., community center, CBOs) rather than an academic institution, ensuring geographic accessibility and trusted community-based locations. Data collection activities were conducted in participants’ preferred language or involved simultaneous interpretation. Additionally, all material pertinent to the meeting was translated by native speakers on the team or professional consultants. We also provided transportation via local car services, childcare, nutritious meals tailored to dietary needs, and support from staff fluent in participants’ preferred languages.

As frontstage implementation progressed, the team often returned backstage to co-develop new solutions in real time to emerging bureaucratic barriers, showing the iterative movement between stages, and how CBPR relies on continuous, responsive approaches. For example, the academic team had to work with the university, as the university had legal and liability concerns about directly contracting local childcare providers through an economic justice model, requiring alternative arrangements for participants and the research team. Additionally, while funders approved the inclusion of food expenses, university contracts often took a restrictive stance, preventing grant funds from covering meals. Yet, providing meals is essential in CBPR approaches, as events took place during mealtimes, the research activities spanned several hours, shared meals fostered connection, and many participants had dietary health priorities (e.g., chronic conditions, food insecurity) that were best addressed by a holistic meal (vs. providing shelf-stable snacks). Further, we have a practice of bringing together community members and academic partners over a meal – a key practice of connection and nourishment that facilitates relationship-building, yet extramural grants did not cover meals for academic researchers (e.g., faculty, staff, students) in these spaces. After many protracted discussions with contracts and grants university-affiliated representatives, the academic team was able to ensure that research-related meal expenses for community members were covered by the research grant. However, prior to contracts and grants approving this expense, our university-based research team had to identify an alternative, discretionary funding source to (in hindsight, temporarily) cover these research-related expenses that are inherent to CBPR and qualitative research methods.

These experiences underscored the importance of accessing each other’s backstage to fully understand the needs and priorities of potential participants, and appropriately budget and advocate for these in grant applications and with academic administrative entities concerned about audit and legality concerns. The institutional pushback also elevates the need for institutions to work to obtain a better understanding of CBPR and its benefits to local communities and the institution.

Enabling Authentic Participation of Community Members as Researchers

CBPR emphasizes authentic inclusion of community members as co-researchers, but institutional structures often complicate this ideal. We describe how we leveraged the backstage spaces to devise and implement creative solutions to enable community members to be frontstage researchers in our study.

CHWs are trusted members of the communities with whom they work, bringing their own lived experience, emotional intelligence, social networks, and institutional and subject matter expertise to their efforts to accompany community members to address and transform their priorities (Montiel et al., 2021). The nature of what makes someone a strong CHW – including their unique position in the community and their lived expertise – also made them key collaborators in the study to ensure that the research: questions were relevant, approach was ethical and aligned with the local context, reflected the values of communities, and the activities had appropriate reach and rigor (Balazs & Morello-Frosch, 2013). Recognizing this, we developed a community researcher program, the Community Science Workers (CSW), to fully equip community members as researchers, through a popular education approach (LeBrón et al., 2024; Michelen et al., 2025). This CSW program provided the team a way to recognize and leverage the dual role of the CHW workforce, maintaining their ties to the community while also actively leading research. Nonetheless, in the backstage, we faced challenges aligning university IRB requirements which were not designed for community-based researchers and inflexible funding mechanisms and restrictions that limited our ability to fully integrate community partners as co-researchers.

First, to be involved in recruitment and data collection efforts, community members had to comply with IRB ethics training requirements and ensure they were aware of key practices to protect participants. We initially anticipated that community members would complete the Collaborative Institutional Training Initiative (CITI) training that is easily available to academic researchers through their universities. We began by requesting guest access to university IDs to enable community members to complete CITI training offered through our university. However, we encountered barriers including lengthy registration and approval processes and the request for personal information (e.g., Social Security Numbers), which some community members were understandably hesitant to provide – particularly as a work-around to address a university-related requirement for community partners to fully participate in overseeing and implementing the research activities. The process of working to gain access to research ethics training for community members also demanded significant time and coordination. To address these challenges, our team identified CIRTification (Anderson, 2015), an online human subjects research ethics training program specifically designed for community research partners. Academic partners advocated backstage for IRB approval of this training for community partners. Once the IRB approved this training, community members could directly access the CIRTification training online without a need to provide sensitive information or navigate bureaucratic processes. Several community partners noted that they found the CIRTification training accessible for them and useful beyond the context of the study. This effort highlighted the importance of tailoring research ethics education and capacity building to the lived experiences and knowledge of CHWs, ensuring it is relevant, engaging, and practical.

Second, the large qualitative study was originally funded for two years (2021-2023), and our team received a one-year no-cost extension (2024) given pandemic and other factors that necessitated additional time to complete research activities. The richness and enormity of the dataset, the deep partnership process in qualitative data analysis and interpretation, as well as time involved in training qualitative researchers (e.g., undergraduate and graduate students) each contributed to the reality that the qualitative analysis and dissemination activities extend beyond the lifecycle of the funding period. In conversations within the partnership, we recognized the limitations of current funding in leveraging the critical role of CBOs in qualitative analysis, writing, and dissemination. Community partners’ involvement is often constrained by limited flexibility in funding resources once the grant period ends, contributing to a need to identify additional funding to support community partner efforts towards analysis, writing, and dissemination, and considering other strategies to reconcile and overcome these fiscal challenges that constrain participatory approaches to research beyond the lifecycle of the grant.

Third, universities and CBOs often have many sizable associated, or indirect, costs of managing the grant and creating and maintaining the physical and human infrastructure needed to create conditions for a successful research project. Grantees’ universities and CBOs require and rely on this funding to cover fundamental expenses (e.g., rent, utility, IT infrastructures) that make the research activities and risk mitigation possible. Indirect cost rates are essential for supporting research activities and infrastructure that cannot be billed as direct costs. Additioanlly, in navigating community partner’s compensation for activities beyond the grant period, the partnership has recognized the need for improving our budget amounts and allocations and the timeline of studies. As an inadequate antidote, academic team members have been able to apply for and receive small internal grants to support continued community partner engagement and draw upon discretionary accounts for any participation that is not currently funded. However, this is a coping strategy that does not address institutional inequities and gaps in funding to support participation of community partners across the lifespan of CBPR activities.

Repeated backstage negotiations and developing workarounds made it possible for the frontstage research process to meaningfully include community partners as researchers. Yet this experience highlights persistent tensions between community-centered partnership ideals and rigid institutional systems that define who can be a researcher and how community expertise is recognized and compensated.

Academic Institutions, including IRBs

Given how distinct CBPR approaches are to traditional biomedical approaches, institutions would benefit from IRBs specialized in CBPR, who develop their knowledge and processes for reviewing community-engaged studies (Brown et al., 2010; Espinosa et al., 2025). This would involve having separate processes and requirements on forms and trainings that align with community-engaged research and CBPR. For example, institutionalizing the use of alternate ethics training for community partners creates mechanisms that enable community partners’ active leadership and participation in CBPR activities. If a distinct IRB is not a possibility, IRBs and academic institutions should consider institutional reform to build IRBs’ capacity on CBPR approaches and outcomes for universities and communities. This includes an understanding about the ways in which current informed consent processes and legalities undermine informed consent and research participation. Ideally, there would be a process to bring together academic IRBs and community members to explore collaborative opportunities for community concerns to inform IRB recommendations and decisions.

Further, the academic institution overall should seek to reduce administrative burdens for CBOs, who may have limited capacity and budget (including indirect costs to support overhead costs) compared to academic institutions (Espinosa et al., 2025). Expanding on the budget constraints, academic institutions and funders are urged to consider how to maintain partnership equity in the grant’s post-funding period to be able to ensure equitable and sustainable partnerships (Carter-Edwards et al., 2021).

Community Partners

To fully assess the risks and benefits of research studies, community partners can leverage their power in community connection and access to clearly establish transparent priorities and standards for the research. For example, communicating what the community/CBO needs from the research (e.g., policy briefs, funding advocacy). It would be helpful for partnerships if community partners sought and advocated for early partnership in the design of research study so that some of the potential issues (e.g., recruitment, budget, risks) are considered from the start. This can also lead to thorough discussion of methods so that research methods align with local practices of knowledge production. Community partners are further encouraged to recognize that academic partners might not be privy to nuanced operational details of CBOs and communities. Additionally, academic partners should encourage discussions of power, without placing the onus of teaching or educating academic partners on the experiences and perspectives of communities and CBOs. Communities and CBOs are encouraged to share suggestions for improvement in partnership development throughout each phase of the partnership process.

Lastly, communities and CBOs can consider investing in the development and maintenance of community IRBs to whom researchers are accountable (Brown et al., 2010; Quigley, 2006; Ye et al., 2014), or coalition of CBOs, formed to protect communities from research that might not serve them, and fully assess the benefits of those research projects that they are willing to consider. Nonetheless, community IRBs are costly to maintain (e.g., given the necessity to be accredited by the Association for the Accreditation of Human Research Protection Programs for universities to rely on these).

Academic Partners

Academic partners need to recognize community partners’ power and ensure that in writing grant proposals, they resource backstage processes to maximize community inclusion, representation, and relevance to maintain equitable partnership and shape the research priorities, questions, and approach. This involves defining and advocating for timelines that are inclusive of community partners’ priorities and needs and include detailed budgets to fund these realities. For example, expanding on the consent process to overcome the limitations placed by the IRB can be resource-intensive, resulting in additional budget needs (Decker & Chongsuwat, 2024). Further, academic partners need to recognize CBOs’ connection to the community is essential. For example, when concerning sensitive topics, such as immigration status, participants need an established trust and relationship, which communities and CBOs are equipped to do (Goldstein & Wilson, 2022; Young & Madrigal, 2017).

Academic partners should recognize that research has historically been conducted within a defined power structure that hinders authentic collaboration and has historically benefited academic institutions and academics themselves (Burke et al., 2024). To counteract this, academic partners should avoid shielding community partners from academic processes (Carter-Edwards et al., 2021) and instead integrate transparent discussions of power to work with communities to identify solutions to some of the barriers that this structure creates. Academic partners can connect with community partners early in the ideation stage of the research process to consider potential harm and actual risks of research questions and research participation that extend far beyond the individual and individual-level frameworks that often guide IRB considerations. These discussions can shed light on the ethical questions of whether the research is warranted and safe, appropriate research methods, and safeguards for individual participants (e.g., immigrants, those with vulnerable health statuses), strategies to build relationships and trust that are fundamental to informed consent, and safeguards against harmful narratives and stereotypes that can emerge from research processes that are disconnected from community. Ultimately, IRBs and institutional practices aim to protect the individual, aligning with community-academic partnership goals. Academic partners should seek to involve community partners as early as possible, with conceptualization of the research questions and methods, grant proposals, IRB proposals and discussions, and study implementation and dissemination. This can help reduce delays, incorporate equitable practices, and maintain community engagement (Onakomaiya et al., 2023).

Lastly, academic partners can work with the IRB to recognize the importance of authentic community engagement and promote community-facing research ethics training. Doing this early on can begin a process of socializing institutional change to strengthen community-academic collaborations and set precedent to build upon this practice for future engagements.