(Illustration by David Plunkert)
Movements for social justice have long recognized the motto “Those closest to the problem are closest to the solution.” People with relevant lived experience, who reside in a shared geographic area and/or who share common aspects of identity or background, are uniquely positioned to engage with critical research questions and help develop and implement solutions. And yet philanthropic foundations and government, the primary funders of research, have been reluctant to invest in them to lead research efforts.
Community-based organizations (CBOs)—which are typically led by community members and formed in direct response to community needs—present one route for people with relevant lived experience to drive research efforts. Yet historically, research investments have been concentrated among largely white-led, affluent investigators and research settings. While we have seen some movement toward community engagement in research, through community-based participatory approaches and funder incentives, these engagements tend to happen only when CBOs and communities have needs that happen to align with the research agenda of scholars who can secure funding to investigate the issue. Ultimately, research dollars still flow primarily through academic research institutions, rather than directly to CBOs, which reinforces the power imbalance.
If those closest to the problem are closest to the solution, then we must equip communities and the organizations that represent them with enough funds to lead their own investigations and develop and implement their own solutions. Through the model of community-led research, a community itself identifies an issue, collects and analyzes information about it, and proposes and implements a solution, with or without support from collaborators.
Philanthropy has a unique opportunity to offer a ripe testing ground for these changes that can ultimately be scaled and spread to other private and governmental funders. Over the last five years, AcademyHealth, a professional association representing the fields of health services and policy research, and the Robert Wood Johnson Foundation (RWJF), a leading national philanthropy dedicated to taking bold leaps to transform health in our lifetime, have piloted a community-led research program to transform local health systems by experimenting with equitable funding structures, supporting an inclusive research culture, and elevating community leadership in research.
This work demonstrates opportunities for all research funders to reconsider how their awards are made, who is funded, how the research is conducted, and how this work is communicated and valued.
Community-Engaged Focus
Community-led research is an important but underutilized approach for funders to consider in their efforts to support thriving communities. Such research can take many different forms. Our work has focused on assisting community-based organizations as leaders in research, which requires adjustments to grantmaking approaches to ensure that the application process is not burdensome or inequitable. It requires an openness and willingness to consider community as a locus for research, with new and different methods identified and championed by communities with their wisdom. And it requires that research funders recognize and confront historical biases that undervalue and underestimate CBOs’ capacity for research.
Research investments have historically favored well-established researchers and institutions, often white-led and with a robust research infrastructure. These institutions typically receive the majority of the available funding from private organizations and government, and they decide the research questions, agenda, and priorities without considering the concerns or needs of underrepresented communities. Furthermore, research funders may hesitate to fund CBOs due to worries about their fiscal stability or perceived lack of research expertise to manage large grants. Academic institutions, even when they conduct research in partnership with a community and work with CBOs or community partners, may not treat them as coleaders or coinvestigators. This top-down approach enables those who are often removed from everyday community experiences to shape scientific inquiry. Ultimately, this funding and power imbalance restricts the scope of scientific investigation, can yield incorrect results that do not reflect communities’ lived experiences or concerns, and perpetuates systemic inequities.
By contrast, community-engaged research involves community members directly in the planning, outreach, execution, and overall process of the research. Over the past few decades, the number of community-engaged research projects has increased significantly. Successful community engagement depends on the quality of partnership between academia and communities. However, despite the goal of equitable partnerships in community-based participatory research projects, power imbalances often persist, particularly in leadership roles, board compositions among funders, and access to funding. Community-led research attempts to build on the successes of community-engaged methods and participatory approaches by positioning community members as leaders of the research process.
Beginning in 2020, the Robert Wood Johnson Foundation sought to explore whether requiring community leadership in research projects could help dismantle the traditional power structures that uphold systems of oppression in health research and practice and build community power. Under its pilot community-led research program, Community Research for Health Equity (CRHE), RWJF awarded grants to 10 organizations in 2022 to conduct projects to address local health-care system issues of importance to communities of color, people with disabilities, LGBTQ+ individuals, and other historically marginalized populations. The CRHE program is managed by AcademyHealth, with programmatic and technical assistance support from nonprofit social innovation firm Design Impact and evaluation support from Change Matrix, a consulting firm specializing in evaluation and capacity building in the human-services sector.
We designed the CRHE program and funding opportunity by working collaboratively with RWJF staff, researchers who partner with community members in research projects, and community members with prior experience in research activities to address historical barriers to successful application for research funding by CBOs. We also experimented with streamlining the application process through shorter narrative responses and fewer application phases. Additionally, we provided applicants with support, including webinars to introduce the funding opportunity, resources to assist in preparing project budgets, and responses to questions from applicants as they developed their proposals. We also engaged reviewers with lived experience and provided a rubric to guide consistent assessment.
Although the RFP was invitational and not open to the public, which can introduce its own bias by relying on invitations through known networks and contacts, we intentionally invited more applicants from CBOs (60 percent of invitees) than from academic institutions. For investigators based at academic institutions, the RFP stipulated that the principal investigators under this program must be either community-based organizations or community-engaged researchers working in equitable partnership with community members/organizations (determined through a review of the project budget and community partner funding allocation), and that the topic of the research project must have originated with the community of focus.
The majority of respondents to an applicant survey conducted by Change Matrix felt that they had an overall positive experience. Specifically, the respondents appreciated the encouragement and formal invitation to apply, the straightforward nature of the proposal process, the clear alignment of the grant opportunity with their community’s needs, and the opportunity to discuss and collaboratively develop the grant application with community partners. Some applicants flagged a lack of support or guidance related to the budgeting process and overall criteria/guidelines for the RFP, reflecting varying levels of capacity, knowledge, and understanding of RFP processes among applicants. This issue was especially true for smaller organizations. While we did offer support during the application process, it was not sufficient to address all applicants’ varying needs.
Despite this challenge, we maintained a majority of applicants from CBOs throughout the application process. Ultimately, most of the grants (60 percent) were awarded directly to CBOs, while the remainder went to academic institutions with a CBO as coinvestigator. This result suggests that our changes to the application process did support CBO applicants to successfully secure research funds.
Realizing Change
Strategies to make research grantmaking equitable and reallocate funding for community-led research are essential to support thriving communities. Even within their current grantmaking systems, research funders can make changes to application requirements, timelines, reviewers, and applicant supports—such as webinars, office hours, and proposal templates—to facilitate the successful application of CBOs for research grants, with or without formal collaborators. For example, funders could require CBOs to lead or colead the proposed project. This leadership role enables community members to determine whether they need research partners, to identify the highest-priority questions for inquiry, and to collect and own their data. Applications for funding can also be streamlined by requesting less detail from potential applicants or considering alternative formats to written submissions (e.g., phone calls or video submissions, applications submitted in different languages, etc.). These changes to the grantmaking approach address inequities that have historically biased research funding toward well-resourced institutions.
To sustain and scale such structural changes, research funders also need to wrestle with historical biases that characterize community-led research as risky, time-consuming, and costly. Consider that CBOs serve communities that have been, because of those same biases, minoritized, marginalized, and systematically excluded from research funding. Cautionary labels about risk, time, and cost are not consistently applied to traditional research efforts that likewise incur challenges and require significant time and money. Research funders have no excuse for not expanding the role of CBOs and community leaders in research, acknowledging and valuing their lived experience as an under-leveraged asset in transformational change.
Read more stories by Megan Collado, Rishika Desai & Jamae Morris.