Introduction
In the context of clinical and public health research, community engagement (CE) represents a spectrum of practices designed to engage communities in the process of health science advancement and discovery [Reference Key, Furr-Holden and Lewis1]. Community advisory boards (CABs) [Reference Bracht and Tsouros2–Reference Silvestre, Quinn and Rinaldo4] are a critical tool for navigating this continuum, elevating the community voice to: 1) center community concerns and culture in research; 2) build community-academic trust through transparent communication; 3) address power dynamics and positionality through acknowledgement of lived experience; and 4) leverage complementary member strengths into a collective partnership serving equity in health science [Reference Koné, Sullivan, Senturia, Chrisman, Ciske and Krieger5,6].
Though modern CABs are utilized in diverse contexts, their origins rest in the health sector where they have long served as sources of disease-specific community consultation, notably in the context of the HIV epidemic [Reference Silvestre, Quinn and Rinaldo4]. In the decades since, these health science CABs (HSCABs) have expanded in reach and now represent crucial liaising mechanisms for an array of community-academic partnerships – each with unique structures and attendant goals. These structural elements include the respective service frameworks of each HSCAB, which may range from consultative services to community-based participatory research (CBPR). Consultative HSCABs, which align more closely with historical board mandates, typically provide on-demand feedback to those with decision-making power (e.g., to medical researchers, practitioners) [Reference Green and Mercer7]. However, the recent enactment of more equitable configurations – through modern CBPR-empowered HSCABs – have shown the potential to amplify impact and have reshaped scientific expectations around the active engagement of community experts in health research [Reference Israel, Schulz, Parker and Becker8].
Reflecting this shift, funding bodies (e.g., NCATS, PCORI) now increasingly require CE activities of their grantees [Reference Leviton and Green9,10]. CABs have emerged as the most common means of fulfilling such mandates [Reference Hood, Brewer, Jackson and Wewers11,12], precipitating an evolution in both the number and nature of HSCABs in operation across the United States [Reference Michener, Cook, Ahmed, Yonas, Coyne-Beasley and Aguilar-Gaxiola13,Reference Stewart, Boateng and Joosten14]. Within this expansion, a dichotomy has emerged between HSCABs designed to support project-specific (time-limited) aims and those which have been established to support broader, project-independent (long-standing) goals, with the former being most common. Broadly, project-specific boards (hereafter, PSCABs) are those formed to address a specific research question (often in the context of a time-limited project or grant mandate) and dissolved upon the project’s dissolution (e.g., cessation of granted funding) [Reference James, Arniella and Bickell15]. The services and scope of such PSCABs are aligned to this reality and are typified by generation of a contained, collaborative community-academic entity that is disbanded following consultation on core project deliverables.
By contrast, and in recognition of literature [Reference Newman, Andrews, Magwood, Jenkins, Cox and Williamson16] demonstrating the increased equity footprint facilitated by stable community-academic partnerships, project-independent CABs (PICABS) now exist as models for sustained and broad CE across the spectrum of health research. The mission and mandate of these boards are varied, characterized by models of integration and community-academic interaction that reflect their unique context [Reference Newman, Andrews, Magwood, Jenkins, Cox and Williamson16]. For example, the Detroit Urban Research Center (Detroit URC) [Reference Israel, Lachance and Coombe17] – a board comprised of members from community-based organizations, health and human services agencies, and an academic institution – has been established to offer stable support to select research teams and community partners, outside the bounds of a single project. Other organizations [Reference Akintobi, Barrett and Hoffman18], meanwhile, have focused on expanding their offerings to increase new contacts and, by extension, reach and equity impact. Across such entities, one common approach has been the establishment of research review boards (RRB) as a core component in the unified mission of advancing research health equity. Complementing the individual protections at the heart of institutional IRBs [Reference Key19–Reference Quinn22], RRBs exist to center community protections in research (see Table 1), extending the community voice throughout the research process to instill best practices in the work emerging from their host – or collaborative – academic institutions.
Table 1. Internal index of terms
Meaningful advancement of equity in research requires the widespread adoption of CE practices; at their most effective, RRBs are positioned to offer, in the time-stable context of PICABs, a novel and effective means for the collaborative promotion and application of these practices [Reference Stewart, Boateng and Joosten14,Reference Payán, Zawadzki and Song23]. However, as an emergent category of CAB service – nested within the recent and rapid proliferation of HSCABs – the extent to which this high-level aim is being realized, in practice, remains unclear. No aggregative effort has yet been undertaken delineating the structural, procedural, and evaluative elements that typify work in this area, and which may underlie trajectories of success, or failure, in the context of RRBs.
Understanding the patterns of best practices, as well as common challenges, experienced by emergent RRBs represents an area of critical study in the domain of translational science – providing a roadmap for refining existing practices, as well as essential guidance for the establishment of new PICABs targeting the advancement of equitable and community-aligned research. To facilitate this knowledge, the present review aims to synthesize the factors that characterize RRBs within the context of PICABs, through summary of the missions, procedures, and impacts demonstrated in the published literature. Due to this emphasis, the current review can be seen as a discussion of the features typifying RRBs operating in collaboration with, and often in the context of, community-academic or community–institutional partnerships. The following questions will guide our discussion:
1. How are RRBs organized and governed?
2. What are their approaches to equity? What are their guiding principles?
3. Who do they represent? How is representation practiced?
4. How are they evaluated? What metrics indicate success?
Methods
A scoping review is a systematic, exploratory process that maps the existing literature on a broad topic to identify key concepts, gaps, and evidence. For our purposes, this methodology was applied to explore and synthesize the range of existing literature on RRB structures, processes, and outcomes. To this end, we undertook a systematic search of PubMed and Web of Science (September 2023–February 2024) following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR; see supplementary materials for checklist) [Reference Shore, Ford and Wat24]. Search terms for all databases included known and emergent terms for community-engaged boards that review research for equity, starting with “Community Advisory Boards,” “Community Ethics Review Boards,” and “Community Institutional Review Boards,” along with “research” and “equity.” The search protocol can be found in the supplementary materials.
The search was restricted to English language articles published between 2008 and 2024 to capture literature published following, and complementing, notable analyses of community review boards and their role in community protections [Reference Shore, Brazauskas and Drew21,Reference Shore, Ford and Wat24]. The current review extends this ethics-focused literature through the introduction of an equity lens focused on the emergent phenomenon of RRBs within PICABs. For clarity throughout this manuscript, we have generated an internal index of relevant terminology (see Table 1). The process of article selection is presented in a PRISMA flow diagram [Reference Page, Moher and Bossuyt25] (Figure 1). Citations were organized and managed in Zotero.
Figure 1. PRISMA flow diagram for eligible article selection.
The searches resulted in a total of 1,878 articles. After duplicate removal (n = 274), titles and abstracts were assessed for eligibility by one author (KW). Inclusion criteria retained articles that mentioned the engagement of a community board for a research project. A total of 1,056 articles were excluded. Major reasons for exclusion were: 1) location outside the United States/Canada; 2) no mention of research review; or 3) article was not original research (e.g., reviews, book chapters). The 548 remaining articles were independently read by one author (KW), and 523 were excluded. Inclusion criteria at this stage retained articles that described the board start-up process, a researcher interaction with an RRB, or evaluation of RRB activities. In cases where the fulfillment of criteria was unclear, consultation was undertaken with two authors (JEP, SW), and a collective decision was made regarding inclusion. Exclusion at this step was due to the description of a PSCAB (vs. PICAB), coverage of RRBs established for nonresearch purposes (e.g., program/policy development), and lack of information in articles which mentioned, but did not detail, RRB establishment (e.g., as part of core CE activities) or consultative process. A final data set of 25 articles remained describing 24 entities that review research for equity.
The characteristics of these final studies were then extracted by one author (KW) and summarized by entity type, location, population served, year established, and funding mechanism (see supplementary materials). Special attention was paid to purpose, structure (including governance), review process, feedback receipt and incorporation, and, where available, evaluation data. The resulting data offered a comprehensive portrait of each RRB and allowed for comparison across entities, united by a throughline focused on identifying gaps in knowledge and informing future practices in RRB formation and conduct.
Results
Board missions and guiding principles
The centrality of community inclusion
At their foundation, RRBs are groups centered on advancing the voice and protection of the community in academic research. This unifying aim, however, is translated into a multitude of unique missions depending on some basic factors – funding structure, location – influencing both the formation and continuation of each entity. In Tables 2 and 3, a selection of these characteristics, alongside the mission for the associated board, is provided for each of our examined groups (see supplementary materials for full details).
Table 2. Included articles and descriptive features of corresponding review entities
a A given review board may be the focus of multiple articles.
Table 3. Mission-related characteristics of identified equity-focused community-academic research advisory boards
a Publication provides coverage of two distinct boards.
Research support in health equity
Evident in our review, and consistent with prior literature, was a distinction between boards initially established to serve a narrow (e.g., study-specific) need, versus those that have their foundations in the provision of broad research review services. While all included HSCABs performed research reviews (RRB), these differences in origin introduced variation in the populations the RRB was intended to serve and the equity-related goals at the root of their charge.
Board settings and structures
Setting and member structure
Most boards were based in a university setting, serving as a centralized resource for their home institution or local region. Exceptions were limited to institution-based boards with statewide reach [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26–Reference Jäderholm, Currier and Brown28] and community-based boards [Reference Key19,Reference Martin Del Campo, Casado, Spencer and Strelnick29], which have no direct affiliation with an academic institution and often sit directly within the community – or communities – they have been established to represent. Board type was not found to have a strong relationship to size, with boards ranging widely between 3 and 50 members and averaging roughly 15 attendees per board meeting. In cases of high reported membership numbers (e.g., n = 50), a rotating structure was implemented, with different members meeting on different days, allowing for meeting and review flexibility [Reference Matthews, Anderson, Willis, Castillo and Choure30–Reference Matthews, Castillo and Anderson32].
Regarding composition, roughly half of all Institution-based boards included a mixture of academic and community members, though the constitution of members and distribution of group affiliations varied widely. Members labeled “academic” may, for instance, refer to individuals across ranks – from primary investigators or high-level researchers to graduate or undergraduate students [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26–Reference Jäderholm, Currier and Brown28,Reference Matthews, Anderson, Willis, Castillo and Choure30–Reference Lebow-Skelley, Scott Tomlinson, Charles, Fuller, Ames and Pearson40]. These individuals were commonly solicited for board participation due to their expertise in an area of direct relevance to the board mission (e.g., public health, nursing, business) [Reference Passarella, Rahmer and Fagan27,Reference Horowitz, Shameer and Gabrilove36,Reference Kost, Leinberger-Jabari and Evering38], though in some cases academic members were also responsible for board formation or high-level direction [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Jäderholm, Currier and Brown28,Reference Evans, Nanda and Ouyang34–Reference Samuel39,Reference Burns, Reeves and Adams41,Reference Sotto-Santiago, Wiehe and Claxton42]. Within these mixed boards, a figure of minimum representation – e.g., “membership must constitute more than half nonacademic, community partners” – was often set, frequently with the further specification that board make-up must reflect key features of the community, or communities, the board had been established to serve [Reference Nanda, Clark and Harrison35]. In such cases, features used to guide member composition typically included demographic markers (e.g., race/ethnicity, age, income, education level) and other relevant metrics of local cultural or geographic diversity. As a result, the member profile of each RRB fluctuated in line with their service area, with state-serving boards [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26–Reference Jäderholm, Currier and Brown28] often showing greater variation than locally-focused entities.
Of note, nearly 75% of institution-based RRBs included in this review – and all community-based RRBs – omitted direct academic membership, with associates instead drawn exclusively from outside the academy. In these RRBs, “community members” were often defined broadly, encompassing unique mixtures of patients [Reference Evans, Nanda and Ouyang34–Reference Horowitz, Shameer and Gabrilove36,Reference Cunningham-Erves, Joosten and Kusnoor43–Reference Hirschey, Getachew and Coleman46], caregivers [Reference Cunningham-Erves, Joosten and Kusnoor43], clinical trial participants [Reference Cunningham-Erves, Joosten and Kusnoor43], and other key interested parties in community wellness, alongside representatives from health and social services [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Passarella, Rahmer and Fagan27,Reference Evans, Nanda and Ouyang34,Reference Burns, Reeves and Adams41–Reference Brockman, Balls-Berry and West45], faith [Reference Passarella, Rahmer and Fagan27,Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Nanda, Clark and Harrison35,Reference Burns, Reeves and Adams41,Reference Cunningham-Erves, Joosten and Kusnoor43,Reference Stewart, Erves and Hargreaves47], community advocacy [Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Cunningham-Erves, Joosten and Kusnoor43], and other support groups [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Passarella, Rahmer and Fagan27,Reference Evans, Nanda and Ouyang34,Reference Lebow-Skelley, Scott Tomlinson, Charles, Fuller, Ames and Pearson40,Reference Burns, Reeves and Adams41,Reference Hirschey, Getachew and Coleman46]. Stringent guidance on demographic composition was less common in these community-focused RRBs, with the distribution of viewpoints as the structural cornerstone throughout. Certain subgroups were uniquely represented in such boards, with one board, for instance, opening participation to youth members [Reference Jones, Bakas, Nared, Humphries, Wijesooriya and Butsch Kovacic48]. Many boards acknowledge the explicit need to engage African American members in their boards to address historical issues of trust in research [Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Evans, Nanda and Ouyang34,Reference Samuel39,Reference Burns, Reeves and Adams41,Reference Hirschey, Getachew and Coleman46,Reference Jones, Bakas, Nared, Humphries, Wijesooriya and Butsch Kovacic48,Reference Ford, Reddick, Browne, Robins, Thomas and Crouse Quinn49]. Additionally, others emphasize the need to increase representation within research studies to more accurately include and reflect diverse communities [Reference Key19,Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Martin Del Campo, Casado, Spencer and Strelnick29–Reference Matthews, Castillo and Anderson32,Reference Lebow-Skelley, Scott Tomlinson, Charles, Fuller, Ames and Pearson40,Reference Sotto-Santiago, Wiehe and Claxton42,Reference Cunningham-Erves, Joosten and Kusnoor43].
Across boards, some notable differences emerged around the dynamics of academic inclusion. Institution-based boards with community-only membership were often characterized by more direct relationships with academic affiliates, particularly from the host institution (e.g., faculty, administrators, other institutional liaisons). In some cases, committees comprising a subset of representative board members and academic partners were formally established [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26]. Such groups most often served as a forum for sharing board insights with institutional parties to advance essential research or action, thus providing a pipeline through which community-led visions can be translated into actionable, institutional initiatives [Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Lebow-Skelley, Scott Tomlinson, Charles, Fuller, Ames and Pearson40–Reference Sotto-Santiago, Wiehe and Claxton42,Reference Patten, Albertie and Chamie44,Reference Hirschey, Getachew and Coleman46,Reference Stewart, Erves and Hargreaves47]. In other cases, particularly among community-based boards, engagement with investigators was less formalized and typically limited to investigators based within – or holding established relationships to – the focal community [Reference Key19,Reference Martin Del Campo, Casado, Spencer and Strelnick29].
Funding and leadership structure
Institutional funding and leadership infrastructure
Boards were predominantly housed at universities and funded by large-scale (e.g., NIH) grants (see Table 3). Such funding is most often provided via a project or center grant, which in turn serves to inform the direction of the board work and member composition. Accordingly, across boards, initial direction and structural support were most often provided by a leader or leaders – elsewhere referred to as “navigators,“ “co-directors,” “chairpersons,” etc [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Matthews, Anderson, Willis, Castillo and Choure30,Reference Nanda, Clark and Harrison35,Reference Harrison, Palmer and Cabrera37–Reference Samuel39,Reference Patten, Albertie and Chamie44]. – working in conjunction with a Principal Investigator (PI) or analogous figure. However, the degree to which individual boards are directly guided by funding structures, or grant PIs, varied.
While leaders are critical for coordination, a core tenant across RRBs was the need to ensure the expertise of leaders is balanced by community voices. The structures emerging to advance this balance have been unique across RRBs; in the CROWN board [Reference Samuel39] for example, perceptions of competing demands and imbalanced influence among academic members led to the revision of leadership structures to cement a place for community members in senior positions. Similarly, restructuring of the Johns Hopkins Community-Research Advisory Council (C-RAC) – undertaken after 11 years of operations – has resulted in a mandate that the board be comprised of at least 51% of community members [Reference Evans, Nanda and Ouyang34]. The board has also established an iterative consultancy process to ensure the feedback of community members is meaningfully incorporated [Reference Evans, Nanda and Ouyang34]. Other RRBs have expanded membership to include private sector partners (e.g., technology, pharmacy) who serve as “accelerators” – bringing in specialist knowledge and introducing opportunities to address questions emerging from the transdisciplinary teams [Reference Kost, Leinberger-Jabari and Evering38]. Only two groups explicitly stated sharing board leadership with the community [Reference Nanda, Clark and Harrison35,Reference Samuel39].
As noted in prior sections, a small subset of RRBs housed at universities mentioned removing academic affiliates from board participation in acquiescence to a fully community-led structure [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Patten, Albertie and Chamie44]. In such cases, RRB gatherings are both composed of and led by community members, while academic input – where relevant or required – is provided indirectly through exchange with key external parties, typically in the context of a separate meeting. Such is the case for the Harvard Community Coalition for Equity in Research [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26], a unique board due to its state-wide reach and institution-based, community-led composition. Here, the RRB is composed of community experts from across the state, tasked with reviewing research for equity. This aim is undertaken during board meetings and later related – along with decisions and points of discussion – to a leadership team that convenes at a separate time and place.
Taken together, these collective efforts reflect the earnest attention paid across all RRBs to creating and sustaining RRB membership structures that enable the respectful and impactful advancement of equity-minded research.
Board member compensation
Consistent with the tenants of respect and balance highlighted above, compensation of board members was noted across nearly all reviewed RRBs. While the transparency of payment particulars was inconsistent, where detailed, member compensation ranged from provision of meals (at time of meeting) [Reference Patten, Albertie and Chamie44] to regular monetary installations per meeting [Reference Burns, Reeves and Adams41,Reference Patten, Albertie and Chamie44], review [Reference Harrison, Palmer and Cabrera37], or service month [Reference Hirschey, Getachew and Coleman46]. Monetary value also varied, from $25/meeting to $100/month. In some cases, hourly rates [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Sotto-Santiago, Wiehe and Claxton42,Reference Jones, Bakas, Nared, Humphries, Wijesooriya and Butsch Kovacic48] were employed at values ranging $20–$50/hour. Only one RRB cited compensation in the form of gift cards [Reference Matthews, Newman, Anderson, Castillo, Willis and Choure31] or transit passes [Reference Martin Del Campo, Casado, Spencer and Strelnick29] to minimize barriers to participation.
Board processes
The research process and review board involvement
RRBs in this review almost universally provided review services at all stages of the research processes, seeking to ensure alignment with best practices, community needs, culture, and priorities. While some organizations emphasized a specific area (e.g., recruitment), the majority were characterized by multifaceted offerings from proposal development through to dissemination (see Table 2). Typical processes related to common research components – question development, recruitment/retention procedures, and dissemination – are summarized below.
Developing research questions
At project inception, investigators who engaged with RRBs often sought guidance in developing research questions deemed relevant, sensitive, and meaningful to their communities of interest [Reference Martin Del Campo, Casado, Spencer and Strelnick29,Reference Horowitz, Shameer and Gabrilove36,Reference Patten, Albertie and Chamie44]. As part of this process, researchers were typically required to provide board members with a brief project overview, detailing the proposed aims, focal population(s), and potential benefits to community health [Reference Brockman, Balls-Berry and West45]. From the RRB perspective, the goal at this stage was the collaborative development of research objectives that meet the needs of the researcher (e.g., addressing the project directive), while ensuring the work is rooted in real-world community issues and protections. Intrinsic to this goal is the establishment, from the outset of a project, of a sincere and organic community-academic partnership.
Recruitment and retention
RRBs played a crucial role in the recruitment and retention of study participants, leveraging member’s deep understanding of community needs and cultural nuance. From this position, RRBs were positioned to provide informed advice on crafting recruitment materials that would both resonate with and be respectful of the community. Such input has demonstrated the potential to enhance participation, representation, and retention rates, particularly among underrepresented populations [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Martin Del Campo, Casado, Spencer and Strelnick29,Reference Matthews, Castillo and Anderson32,Reference Sotto-Santiago, Wiehe and Claxton42–Reference Brockman, Balls-Berry and West45] – essential steps for ensuring institutional research outputs are informed by, and reflect, the community. Where merited (e.g., due to alignment of a project/researcher with priority community needs), select boards also provided researchers with practical advice on routes of local engagement [Reference Matthews, Anderson, Willis, Castillo and Choure30,Reference Nanda, Clark and Harrison35,Reference Kost, Leinberger-Jabari and Evering38,Reference Hirschey, Getachew and Coleman46–Reference Ford, Reddick, Browne, Robins, Thomas and Crouse Quinn49]. These personalized processes – supported directly through board members and their community of professional contacts – were typically offered in an effort to build trust between researchers and community members for long-term research partnerships.
Dissemination of research findings
Boards also consistently cited engagement from researchers who had completed, or were approaching completion of, a research project and seeking guidance on the dissemination of their findings. In this domain, RRBs prioritized guiding clients towards means of dissemination that were both accessible and actionable for the community – each component being necessary to ensure community benefit from research activities. Support processes ranged from education and consultation [Reference Matthews, Newman, Anderson, Castillo, Willis and Choure31,Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Brockman, Balls-Berry and West45] to hands-on generation of lay-friendly reports and presentations [Reference Carter, Reitzel, Chen, Woodard and Obasi33]. For example, board members have actively contributed stories and profiles for newsletters and have spoken about health projects at public events such as health fairs [Reference Sotto-Santiago, Wiehe and Claxton42]. Others have served to guide researchers on the best platforms and methods to reach the focal audiences, ensuring that the community benefits from the research insights [Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Nanda, Clark and Harrison35,Reference Kost, Leinberger-Jabari and Evering38]. This mindful engagement between researchers and the community is integral for demystifying the scientific process for the public and encourages community members to participate in future research. RRB consultations serve to inform and expedite this process, to ensure sensitive and effective reach of collaborative results.
Community protections and ethics
Review boards can facilitate relationships with communities by helping to identify appropriate partners, highlighting community needs, and developing research agreements. Those RRBs reviewed herein, for instance, played active roles in reviewing ethical considerations, with the aim of ensuring that all community partners and participant rights and interests are protected [Reference Key19,Reference Martin Del Campo, Casado, Spencer and Strelnick29]. Boards also served as guardians, reviewing proposals to ensure community risks and benefits are balanced. In the process of critiquing research proposals, RRBs sought to help identify potential community partners and suggest engagement strategies that are ethically sound [Reference Key19,Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26–Reference Jäderholm, Currier and Brown28,Reference Matthews, Anderson, Willis, Castillo and Choure30]. In doing so, these organizations consistently served to safeguard community interests and ensure that research does not exploit or harm either its participants, or those who share a community with these participants.
Communication and feedback mechanisms
Effective communication is a priority of any community-academic partnership and emerged in the literature as a cornerstone in many RRB missions. Despite this, the description of feedback procedures (e.g., provision of research critiques) was lacking. Where available, data indicated that feedback was typically shared during or directly following the RRB meeting. Most frequently, boards would provide written minutes or distilled notes back to researchers, ranging from “substantive” (providing learning opportunities regarding relevant communities or cultures) [Reference Ford, Reddick, Browne, Robins, Thomas and Crouse Quinn49] to “economical” (addressing only questions initiated by the researcher) [Reference Matthews, Newman, Anderson, Castillo, Willis and Choure31]. Alternatively, digital tools (e.g., Zoom) were used to record consultations and minutes were shared with researchers to facilitate transparency and accountability [Reference Martin Del Campo, Casado, Spencer and Strelnick29,Reference Harrison, Palmer and Cabrera37]. Less commonly, some RRBs developed dedicated tools (e.g., the Health Equity Review Rubric) to provide systematic, comprehensive feedback [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26]. Uptake of such standardized processes was, however, low across the reviewed sample.
Evaluation
Less than half of RRBs (n = 11) provided detailed evaluation data. Among those presenting such data, evaluation – and, by extension, success of the broader HSCAB or RRB mission – was measured from varied perspectives and characterized by differing metrics. However, while disparate, stated evaluation approaches could be grouped clearly by a focus on either internal member assessment (e.g., board member perspectives) or external user critiques (e.g., academic/user perspectives), and further by an emphasis on either internal board function or external user benefit. Across RRBs, methods for evaluation were also shared and included surveys, focus groups, and individual interviews [Reference Martin Del Campo, Casado, Spencer and Strelnick29]. An overview of evaluation procedures and outcomes, according to these dichotomized samples and assessment approaches, is provided below.
Evaluation: board member perspective
Where present, efforts to measure success, from the board member perspective, differed in the degree to which they emphasized either: 1) the internal function of the RRB or 2) the RRB’s perceived efficacy in benefiting the health equity practices of their user-base.
Internal CAB and RRB function
Internal evaluations tended to prioritize assessment of RRB members’ understanding of, and comfort in, their role. However, the depth of these assessments varied, with implications for the emerging portrait. Results from surveys employing simple five-point Likert-scale ratings statements (e.g., “overall satisfaction, ideas taken seriously”) [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26] were often positive. However, where members were offered the opportunity to expound – whether through open-ended evaluation questions, focus-group discussion, or dedicated interviews – feedback often signaled areas of need or desired change.
For example, interviews conducted by an external evaluator following the first year of the Bronx Community Research Review Board (BxCRRB) [Reference Martin Del Campo, Casado, Spencer and Strelnick29] – while highlighting positive experiences, including increased engagement with local IRBs among members – also signaled that members “initially lacked a clear understanding of the purpose of the BxCRRB” and had not understood that their role would center on review of research. Other members reported feelings of discomfort with a perceived lack of preparation among their fellow board members and antagonistic or disrespectful treatment by clients. This feedback directly informed RRB practices in future years – elevating the involvement of existing BxCRRB members in member recruitment and ensuring integration of practical suggestions for training workshops (e.g., early distribution of agendas; expanded time for questions) to advance clarity of roles and embed ongoing opportunities to seek support or clarification.
Despite limited examples, select themes were common across reported evaluations leveraging a focus group structure. The presence of tension in RRB meetings, as alluded to in the BxCRRB, was echoed [Reference Lebow-Skelley, Scott Tomlinson, Charles, Fuller, Ames and Pearson40] in other settings. The root and results of these tensions differed by organization, with members of the Community Coalition for Equity in Research [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26] framing this tension as arising from genuine differences of opinion or experience that were met with respect (75% reported that conflict was handled “well”). Tensions emerging between the board and host institutions were, by contrast, attributed to feelings of continuing distrust; for instance, members of the HERCULES Stakeholder Advisory Board [Reference Lebow-Skelley, Scott Tomlinson, Charles, Fuller, Ames and Pearson40] expressed reservations regarding the host university’s motivations and commitment to ensuring research insights reach the community. In this setting, the availability of trusted community-engagement (CE) staff served to establish productive dialogue and ensure continuity of partnerships and productivity. The presence of such supports was assessed over time, with high ratings for these staff or structures [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Carter, Reitzel, Chen, Woodard and Obasi33].
Self-perceived impact
Mission
As a component of their internal impact evaluations, a subset of CABs asked RRB members to articulate their mission. For example, among affiliates of the University of Illinois at Chicago’s Community Engagement Advisory Board (CEAB) [Reference Matthews, Anderson, Willis, Castillo and Choure30], respondents “emphasized that they are community representatives, community gatekeepers and protectors, and liaisons between researchers and the larger community.” The feeling of serving as a “proxy for the real community” was also expressed, alongside a sense of responsibility to protect served communities from harm (e.g., over-researching; lack of follow-through on promises made). While not framed as a formal component of evaluation processes, where present, such questions demonstrated consistency between members’ self-held sense of purpose and alignment with the impact goals of the host organization (see Table 3).
Capability and external impact
Where conducted, internal RRB evaluations consistently indicated that members viewed themselves, and their organizations, as a valuable resource for advancing equity in research. Areas of cited strength included the ability to “explain cultural norms,” “anticipate what would be feasible/acceptable to community members,” and “discuss the history of abuses associated with research and resultant community mistrust”[Reference Matthews, Anderson, Willis, Castillo and Choure30]. However, despite these perceived strengths, evaluations showed variation in the degree to which board members felt equipped to offer research feedback that would prove useful and effective [Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Evans, Nanda and Ouyang34]. Participants in the Johns Hopkins Community-Research Advisory Council (C-RAC) [Reference Evans, Nanda and Ouyang34], for instance, suggested that additional, specialized research training would be of benefit, particularly in the areas of research methods, hypothesis formalization, dissemination processes, and grant proposal development. Respondents expressed a willingness to engage in such training at least once per year (up to 4).
Despite this desire for procedural adjustments, available reports consistently indicated that members viewed their research critiques and/or consultations as having a positive impact on resulting projects. Surveys conducted over a period of 6 years, among current and former members of the CEAB [Reference Matthews, Anderson, Willis, Castillo and Choure30] (n = 106), indicated that 90% of respondents felt their consultations improved the relevant project “always or most of the time,” and 98% would recommend a research consultation with their board. Members of other RRBs were similarly positive about the value of their consultations [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Harrison, Palmer and Cabrera37]. Nonetheless, room for improvement was evident, with some members expressing feeling unheard or unvalued in their consultations [Reference Harrison, Palmer and Cabrera37]. A lack of clarity around the extent to which feedback was ultimately integrated in researcher’s work was, likewise, expressed, suggesting a need to ensure the placement of structures to “close the loop” of research communication – not only between the host organization and external community but also with the board itself [Reference Matthews, Anderson, Willis, Castillo and Choure30]. Mixed opinions of the perceived “readiness of investigators,” to engage communities, were also, notably, reported [Reference Matthews, Castillo and Anderson32].
Internal benefit to board members
In a few cases, as part of their internal evaluations RRB members were asked to comment on the degree to which their membership had brought personal benefit. Results of these evaluations suggested a range of direct individual and professional benefits due to member’s RRB service and affiliation. Members of the CEAB [Reference Matthews, Anderson, Willis, Castillo and Choure30], for instance, felt their RRB had facilitated increased knowledge (84%), expanded networks (76%) and establishment of new community relationships (51%). These respondents signaled that their engagement allowed them to learn about the spectrum of research being undertaken in their area (e.g., Chicago) and in turn share this “hard to find” information with their families and communities. Such benefits were associated with high degrees of satisfaction with board participation (98%), with the majority (90%) of members planning to continue their engagement [Reference Matthews, Anderson, Willis, Castillo and Choure30]. Members of other RRBs also valued increased research awareness and knowledge [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Evans, Nanda and Ouyang34], with some indicating their experience raised their likelihood of research participation or recommendation of participation to others [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26]. Research skills cited as tangible benefits included receipt of formal training/certification in human subjects research, exposure to manuscript writing processes, engagement with other (e.g., national) advisory boards, and feeling included on the research teams for which they provided consultation [Reference Evans, Nanda and Ouyang34]. The value of financial compensation for time spent on the board was also observed across groups.
Evaluation: academic perspective
Efforts to conduct evaluations of the external impact RRBs exerted on their user base were characterized, overall, by systematic approaches that sought to capture two core dimensions: 1) the subjective consultation experience of RRB users and 2) the objective impact of these consultations on their research formulations and output.
Subjective perceptions of value
Among groups with available data, subjective user ratings of services were almost universally positive. Across evaluations, researchers characterized their experiences as “excellent or very good,”[Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Harrison, Palmer and Cabrera37] and endorsed satisfaction with the service provided [Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Evans, Nanda and Ouyang34]. When asked about their reasons for seeking consultation, respondents offered varied responses, including but not limited to: the desire for feedback on projects prior to grant submission (e.g., to “ensure community input on their proposal”), advice on the formation of a CAB, identification of community partners or methods to leverage existing partnerships, instruction on data collection approaches, and review of study materials (e.g., for accessibility, acceptability) [Reference Evans, Nanda and Ouyang34,Reference Harrison, Palmer and Cabrera37]. Board members were regarded as knowledgeable across these areas of need [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Matthews, Newman, Anderson, Castillo, Willis and Choure31]. Users reported that their consultations were valuable for their projects[Reference Carter, Reitzel, Chen, Woodard and Obasi33,Reference Harrison, Palmer and Cabrera37] and cited the value of “access to diverse stakeholders with “lived and professional experience.”[Reference Evans, Nanda and Ouyang34]
Regarding implementation, researchers reported altering, or planning to adapt, key elements of research for purposes of equity, including engaging existing community partners with study planning; revising study language and planned activities for inclusivity/accessibility (or developing such activities); soliciting trusted patient advocates and community organizations to facilitate broader recruitment; integrating consideration of community-level social/emotional needs when engaging participants; and building structures to ensure timely sharing of results in a manner that “incorporates the needs, preferences, and values of stakeholders.”[Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26] In evaluations, feedback spurring these changes was characterized as respectful and constructive [Reference Carter, Reitzel, Chen, Woodard and Obasi33], though some respondents felt the timeline could be improved (e.g., shortening delays between consultation-seeking and scheduling; lengthening the period over which feedback is given) [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26,Reference Harrison, Palmer and Cabrera37]. A desire for greater clarity on what to expect from consultations was also articulated by some users [Reference Emmons, Curry, Lee, Pless, Ramanadhan and Trujillo26], though respondents perceived services to be in line with expectation and of a quality suitable for recommendation to collaborators [Reference Carter, Reitzel, Chen, Woodard and Obasi33].
Objective impact
Examples of objective measurement of RRB impact included the application of the “Community Stakeholder Impact on Research Taxonomy Measure,” a validated, semi-structured interview with seven specified items which allow for open-ended expansion on topics related to the influence of boards on research output [Reference Brockman, Balls-Berry and West45,Reference Stallings, Boyer and Joosten50]. In their application of this measure, Mayo Clinic researchers asked users of their CAB “In what ways did the feedback you received from our CAB influence your research?”[Reference Brockman, Balls-Berry and West45] and offered prompts in seven areas of interest informed by the measure taxonomy: 1. Pre-research, 2. Infrastructure, 3. Research design, 4. Implementation, 5. Analysis, 6. Dissemination, and 7. Post-research. Results indicated impacts across these domains, with proportion of endorsements ranging between 6% (analysis) up to 41% (study design, implementation). Crucially, these impacts reflected those experienced by the respondent following their consultation, without reference to their a priori expectations in entering the consultations.
Other objective assessments included quantifying the research impact in terms of the number of research projects modified or impacted by RRB feedback. Information on such assessments was rare, most often consisting of satisfaction surveys and follow-up meetings, used to determine the extent to which the recommendations of the board have been implemented [Reference Matthews, Newman, Anderson, Castillo, Willis and Choure31,Reference Nanda, Clark and Harrison35,Reference Brockman, Balls-Berry and West45]. For instance, among 14 respondents to a C-RAC researcher survey, 13 indicated they had integrated feedback from their C-RAC sessions into their research [Reference Evans, Nanda and Ouyang34]. Longitudinal (2009–2014) tracking data generated by Community-Engaged Research Navigation Program (CEnR-NAV) [Reference Kost, Leinberger-Jabari and Evering38] – a collaboration between the Rockefeller University Center for Clinical and Translational Science and the Clinical Directors Network – demonstrated 44 early-stage projects were routed through the navigation service, ending in 25 approved protocols which translated into publications (n = 11) or, in some cases, external funding (n = 7). Crucially, the resulting protocols were characterized by integration of at least one translational aim (36%), engagement of at least one community partner (76%) and elevation of community representatives as coinvestigators (47%) [Reference Kost, Leinberger-Jabari and Evering38]. In the CEAB [Reference Matthews, Newman, Anderson, Castillo, Willis and Choure31], one-year follow-up data similarly indicated a high uptake of board recommendations among consultation recipients (87%), with the majority (93%) further indicating that the content of their meetings had “influenced their thinking” as they planned future research. Direct impacts on recruitment, dissemination, and engagement practices were also widely reported in other evaluations [Reference Evans, Nanda and Ouyang34,Reference Harrison, Palmer and Cabrera37].
Discussion
Ethical research necessitates meaningful engagement of community perspective and experience – a reality reflected by increasing demands from funding bodies to demonstrate substantive CE efforts in translational enterprises. Examination of how CABs have evolved against this shifting landscape is essential for understanding the factors that are associated with sustainable and successful impacts. In this review, we focused on an emerging offering of HSCABs – RRBs – detailing the mission, structures, processes, and impacts that typify these equity-advancing entities. Our synthesis revealed a unity of purpose across RRBs, with variations of execution that reflected a mixture of necessary differences, unique challenges, and opportunities for methodological advancement and alignment. We offer a summary of features typifying current best practices in RRB design, alongside empirically informed suggestions for refinement, in Table 4. The discussion of these elements is provided, in brief, below.
Table 4. Roadmap of key Research Review Board (RRB) design elements: current state of practice and literature-informed considerations
Areas of consistency
The centrality of community inclusion in RRBs is crucial for improving the relevance, quality, and impact of research. These boards are centered on and unified by a mission to enhance the community’s role and voice in academic research, with our review indicating that the particulars of their goals appropriately vary to accommodate site-specific factors (e.g., funding structure, local health needs/priorities). In seeking to promote health equity by bridging the gap between researchers and the community, RRBs were further linked by a collective goal to engage the community at every stage of the research process, from question development to dissemination. While the particulars of consultation procedures varied, the infrastructures across RRBs were consistently designed to ensure routes of support for investigators, whether their goals were early stage (e.g., proposal development, recruitment design) or late (e.g., analytic considerations, accessible dissemination approaches).
Areas of Divergence
While aligned in mission and broad process, individual variation in operation was evident across RRBs. One significant point of divergence concerned evaluation and feedback procedures. Within reviewed articles, only a minority of boards provided data regarding either internal (e.g., self-reporting by RRB members) or external (e.g., reporting by RRB users/consultees) evaluations. The absence of such systematic information leaves unanswerable, in many cases, the key question of impact. Among RRBs providing evaluation data, recorded responses indicated a high degree of satisfaction (both among RRB members and users), with clients indicating uptake of RRB feedback in their research and inclination to continue engagement with their respective boards. While encouraging, the absence of comparable data from the majority of RRBs makes it difficult to ascertain the degree to which such positive responses are indicative of the universal value of RRBs, or whether the presence of evaluation procedures is a correlate of high-functioning boards (e.g., characterized by adequate training, receptive institutions, responsive research communities).
Relatedly, the process of providing feedback to researchers varied widely across boards. While some groups implemented iterative processes that encouraged sustained community-academic engagement, others were characterized by divisions in communication and associated concerns about the uptake or implementation of board input. Such issues highlight the importance of open, clear, and systematic communication procedures, to ensure alignment of expectations and pursuit of genuine partnership between all parties.
Additional challenges facing RRBs included differences in funding structures, membership composition, and location. Most reviewed boards were housed in university settings, included both academic and community members, and received Federal or other external funding. However, a subset of RRBs were community-based and received funding from smaller private or foundation grants. These latter entities more commonly cited issues of sustainability, while boards based in academic institutions observed challenges related to academic leadership dynamics [Reference Martin Del Campo, Casado, Spencer and Strelnick29] or conflicting interests – in some cases leading to tensions and associated modifications of board structures to ensure an equal balance of community-academic voices (e.g., CROWN CAB; Johns Hopkins C-RAC), in others to the development of strictly community-led entities to preserve impartiality and local relevance. Navigation of these dynamics posed challenges across several RRBs, highlighting the need for the solicitation of regular feedback and open communication within RRBs alongside the external provision of research reviews.
Strengths and limitations
Our review sought to distill the literature on long-running HSCABs whose service offerings include an RRB. To ensure replicability and extension of this focus, we limited our literature search to traditional publication routes (e.g., indexed journal articles). We acknowledge that reliance on these routes may have resulted in the omission of relevant organizations whose outputs are confined to the “grey literature” or other paths of dissemination.
Due to the nature of academic publication, it is possible the literature in our review also reflects an overrepresentation of HSCABs with a University base/affiliation, or with a mixture of community and academic members. We further acknowledge that these HSCABs, due to their institutional affiliations, serve communities whose levels of resourcing and areas of priority may differ from the wider fabric of the United States. Adding to a growing body of literature [Reference Becenti-Pigman, White, Bowman, Palmanteer-Holder and Duran51], a recent review has, for example, offered insight into a vast infrastructure of Indigenous ethics and Tribal Research Review Boards [Reference Kuhn, Kuhn, Vendiola and Lefthand-Begay52] – the majority of which did not emerge in our search. Through the widening of search methods, future work in this area could meaningfully expand the portrait of RRB structures and functions offered in the current review.
Such methodological growth would, ideally, be met by investment – on the part of HSCABS – in advancing the recording and dissemination of their board structures and functions. We are aware, for example, of the expansion of “Coalition Boards” (e.g., the Morehouse Community Coalition Board) [Reference Akintobi, Barrett and Hoffman18] in the context of Prevention Research Centers, many of which have integrated RRB functions. While such centers were identified in our literature screenings, published information on their establishment and operations was too limited for inclusion in this review. Future work will be positioned to delve further into areas of interest (e.g., RRB power dynamics, issues of positionality within institutions) which received allusion, but minimal coverage, in the examined literature. Increased contributions in these areas – whether through traditional or nontraditional routes of publication – will be crucial for further refining the design and delivery of RRB services.
Summary
Our review indicates RRBs deliver critical insights that enhance the relevance, quality, and impact of research by ensuring study elements align with community culture and needs. By fostering strong partnerships and continuous dialog, these RRBs are positioned to bridge the gap between researchers and communities, paving the way for more inclusive and impactful research outputs. However, this work has also signaled that board effectiveness may be undermined by a lack of systematic evaluation, potential conflicts of interest, unexamined leadership structures, and inconsistent feedback implementation. As RRBs continue to expand, addressing these data gaps will be essential for maximizing the benefit of these boards in their growing service of research health equity.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/cts.2025.50.
Acknowledgments
The authors would like to acknowledge MICHR leadership including Julie Lumeng, Erica E. Marsh, Beth LaPensee, and LaTonya Berryhill who support the work of Community Engagement and our approach to research.
Author contributions
Polly Y. Gipson Allen, Jodyn Platt, Susan Woolford, and Patricia Piechowski conceived of the review article and contributed to editing of this manuscript. Katarzyna Wilczek conducted the data collection and extraction. Analysis, writing, and editing of this manuscript was completed by Katarzyna Wilczek and Ashley Nordsletten. Luther Evans, Sharon Saddler, and Ella Greene-Moton contributed to edits of this manuscript.
Funding statement
This work was supported by federal funds from the National Center for Advancing Translational Sciences through the CTSA Program grant UM1TR004404.
Competing interests
The authors have no conflicts of interest to declare that are of relevance to the content of this article.
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