To move the needle on patient-centered and community-driven health innovation, multipronged approaches to address upstream and downstream health system challenges are needed. These efforts should include upstream reforms to grant programs funding health care innovation and downstream interventions to support patients in navigating that care. Two distinct approaches that deserve more attention from the health services research community are participatory grant-making and peer health navigation. Participatory grantmaking is just one of many community-centered grantmaking models. Similarly, peer health navigation is a type of patient navigation model. Both approaches offer opportunities at different places along the continuum of community engaged research to tackle persistent health disparities.
Participatory grant-making: An innovative approach to funding health services research
Despite ongoing federal efforts to improve engagement and participation of community members in the research process, there are few federal avenues to support integration of participatory engagement practices in the grant process itself. Community-based organizations (CBOs) are critical vanguards of health equity interventions. However, CBOs are consistently underfunded and under-prioritized in funding decision-making. Funding policies perpetuate structural inequities and are often misaligned with the needs of “small, social justice-oriented community-based organizations,” particularly those serving racially and ethnically minoritized communities. Funding thresholds for community engaged work is incredibly low and even in well-established community-academic partnerships, CBOs and community members are underpaid. When community partners on federal grants are paid for their contributions, there are often significant administrative hurdles associated with receiving payment.
These inequities highlight why a redesign of traditional funding decision-making and grant approaches is needed. Grantmaking approaches that involve communities and challenge power imbalances are essential to more equitably allocating public health and health care resources. Community-centered grantmaking approaches can take on many forms and there are several related approaches such as trust-based philanthropy, collective impact, and placed-based philanthropy. Participatory grantmaking is one pathway of community-centered grantmaking approach that demonstrates potential to mitigate current funding disparities. Participatory grant-making is a bottom-up alternative to traditional funding allocation, in which community members drive decision-making around who and what gets funding.
In recent comments to Congressional leaders on Cures legislation, AcademyHealth called for the development of a participatory grant-making process within the NIH and other federal agencies. Participatory grant-making emerged from the philanthropy sector as a model for shifting decision-making power to those that are impacted by funding decisions. A participatory grant-making approach has been highlighted to be important for enhancing community engagement in health promotion and platforming community-driven solutions beyond what standard funding opportunities allow. Such models have been implemented by the New York City Department of Health and Mental Hygiene and Boston Public Health Commission.
The Robert Wood Johnson Foundation’s Community Research for Health Equity program (CRHE), managed by AcademyHealth, supports community-led research on local health system transformation and embeds principles of participatory grant-making in its design.
Strategies to make research grantmaking more equitable could include engaging those impacted by the research in the design of the funding opportunity, providing alternative application formats (e.g., video submissions), diversifying the applicant pool through new outreach approaches, and selecting reviewers who reflect the impacted communities. As participatory grantmaking programs are further developed and scaled, they could inform federal research grantmaking reforms.
Peer health navigation: demystifying complexities around health system navigation
A wealth of research has focused on community health worker models (CHWs) to ameliorate health disparities, and several studies have demonstrated the benefit of these models in improving access, receipt, and utilization of health care services for historically marginalized communities.
One lesser studied model is peer health navigation (or peer health mentorship). Peer health navigators (PHNs) are not usually health care professionals but rather members of the community that share lived experiences related to the health issues of concern. PHN programs focus on connecting patients with a trained mentor who can serve as an advocate and liaison between patients and health or social services, particularly helping patients navigate the complex and fragmented health care system. Mentors draw from their own lived experiences and structured training to support patients and recipients of health services.
Parent mentorship is an example of a PHN model where the mentor has a child that is a beneficiary of the program of interest (e.g., Medicaid), has the same diagnosis, or the same disability as the family receiving the support. One RCT found that parent mentors were more effective in connecting children to coverage than traditional state Medicaid/CHIP enrollment navigators. Parent mentors are uniquely positioned to understand common pain points (e.g., confusion around changing eligibility rules) and salient stressors (e.g., financial burdens) related to insurance coverage.
Other research has looked at the use of peer navigation to support Medicaid beneficiaries with physical disabilities. Our Peers—Empowerment and Navigational Supports (OP-ENS) is a PHN intervention designed to help Medicaid beneficiaries with physical disabilities access the health care and social services they need. OP-ENS PHNs were other individuals with experience as a person with a physical disability, working knowledge of Medicaid, familiarity navigating the health care system, and strong interpersonal skills in mentorship and leadership. OP-ENS PHNs helped beneficiaries achieve personal health goals such as increasing physical activity or accessing disability transportation services.
Conclusion
As health leaders and policymakers with a vested interest in improving population health think of new approaches to fund and support, these models should be at the top of the list. Participatory grant-making empowers communities by directly involving them in funding decisions, ensuring resources are allocated where they are needed most. Participatory funding approaches also make grant decisions more transparent and accountable to the end-users. PHNs have lived experiences that can engender compassion, relatability, and relationality not often possessed or provided by traditional non-community-based navigators. These attributes enable navigators to build trusting relationships with patients and serve as important conduits for continued health system engagement. Not only are these approaches important for shifting power structures and eliminating healthcare access barriers, but these examples also align with the recent efforts by the NIH to revise their grant review process and the latest research highlighting the importance of having communities as full partners and leaders in health innovation.