Abstract
Introduction
The COVID-19 pandemic disproportionately impacted ethnic minority and other underserved communities, prompting the federal government to fund community-led health literacy initiatives. This evaluation shares challenges and lessons learned, and identifies best practices from community-based organizations (CBOs) partnering with academia and local government to support health literacy programming.
Methods
In 2023, 20 representatives from 12 CBOs in Southern California responded to an interviewer-administered survey, including open-ended questions about lessons learned. We analyze text data to identify key themes.
Results
CBOs expressed a need for additional financial resources and technical assistance, including grantsmanship training, access to in-language resources, support to build and use in-house evaluation systems, and greater university oversight for student collaborators. Respondents highlighted the importance of community engagement efforts to build trust and enhance the uptake of programming. They also stressed the need for specialized training of community health workers engaged in health programs and the utilization of population sub-group data to inform policy and funding development to better serve communities’ needs.
Conclusion
CBOs are eager to partner with government and academia and acknowledge the need for targeted support and resources that can be facilitated through multisectoral partnerships. We offer recommendations and actionable strategies for funders and academia to create and improve equitable partnerships with CBOs. Partnerships that address the needs and systemic barriers experienced by ethnic minority communities will support local public health goals while fostering resilience and health equity.
Keywords
Across the United States, health disparities are pervasive and attributable to differences in socioeconomic status and variations in access to health care and health-supporting resources. The COVID-19 pandemic highlighted key challenges in public health communication that affected ethnic minority communities deeply, including widespread misinformation, significant mistrust of the COVID-19 vaccine, and historical mistrust of research. Simultaneously, an evolving scientific base on preventing COVID-19 infection coupled with low health literacy and fragile digital literacy skills served as barriers for individuals to access accurate health information or follow the evolving public health recommendations (Bin Naeem & Kamel Boulos, 2021; National Academies of Sciences, Engineering, and Medicine, 2022). Consequently, in the United States, African American, Latino, American Indian, and Alaska Native communities faced a disproportionate burden of COVID-19 infections, hospitalizations, and mortality (Aburto et al., 2022; Luck et al., 2022). In San Diego County, at the Southern California U.S.–Mexico border, Hispanics, Native Hawaiian and Pacific Islanders, and Black and African American individuals showed disproportionate infection rates compared with White persons (i.e., rates per 100,000 were: 25,924, 45, 478.1, and 17,387.4, respectively), and Hispanics disproportionally -represented in the County’s hospitalizations and deaths (San Diego County News Center, 2022).
The COVID-19 pandemic underscored the need to improve personal health literacy to support the health and well-being of individuals, communities, and nations (Kindig et al., 2004). Personal health literacy is defined as an individual’s ability to access, understand, and use information and resources to promote their health and that of others (U.S. Department of Health and Human Services, 2021). Low health literacy imposes a significant financial burden on the U.S., estimated at U.S.$106–U.S.$238 billion annually due to low use of preventive care, poor treatment adherence, and increased hospitalizations and mortality (National Academy of Sciences, Engineering, and Medicine, 2022). To effectively support ethnic minority communities and promote equitable access to health services and resources, the U.S. Healthy People 2030 emphasizes the need for innovative strategies to improve health literacy among ethnic minority communities (U.S. Department of Health and Human Services Office of Disease Prevention and Health Promotion, 2022a, 2022b).
Significantly, U.S. federal agencies now recognize that private and public institutions including community-based organizations (CBOs) play a key role in building health literacy in their communities (U.S. Department of Health and Human Services Office of Disease Prevention and Health Promotion, 2022a, 2022b). In 2021, recognizing the urgent need to respond to the COVID-19 pandemic, the U.S. Department of Health and Human Services (HHS) Office of Minority Health (OMH) issued a request for proposals (RFPs) to address low health literacy among underserved and structurally vulnerable communities across the United States. The novel program was entitled:
While these efforts provided a critical opportunity for implementing community-based approaches to address health literacy, gaps remain in understanding the challenges CBOs encounter in collaborating with government and academia. Therefore, this novel qualitative evaluation sub-study describes the lessons learned by a network of CBOs that were funded to support health literacy in a large Southern California county under the federal
Method
Setting
Program activities were conducted in San Diego County, the second largest county in California and home to ~3.3 million individuals. The population is diverse: 35% are Hispanic/Latino, 6% are African American/Black, 1% are American Indian, Alaska Native, 13% are Asian, and 44% are non-Hispanic White; 23% of persons are foreign-born and in the 2021–2022 fiscal year, 5,055 refugees were resettled in San Diego. Importantly, 10.7% of persons are living in poverty (San Diego County Health and Human Services Agency, 2022; US Census Bureau, 2023).
Partnerships
A partnership involving local government, academic partners, and CBOs successfully obtained federal
In brief, upon receiving the notice of award, the city and university’s Center of Community Health convened a steering committee comprised representatives from local cities, jurisdictions and academics; they developed and disseminated an RFPs to the county’s non-profit sector (i.e., CBOs, ethnic CBOs, federally qualified health centers [FQHCs]) with the goal of distributing funds to CBOs who would implement community-led programs to build health literacy. Recognizing that local CBOs are best poised to implement public health strategies relevant to their communities in an accessible and effective way, the RFP was informed by a series of community conversations facilitated virtually for each of the participating cities to obtain input from community organizations about the greatest community needs, challenges, and strengths. The university coordinated these efforts, hosted a bidder’s conference, and provided voluntary one-on-one consultations to interested agencies as part of the project’s community-engaged approach to building capacity with local CBOs.
The grant selection committee—comprised 11 members from academia, government, and CBO sectors—selected 12 local CBOs and ethnic CBOs for funding for periods ranging from 10 to 12 months. CBOs designed and implemented community-focused health literacy interventions for locally underserved populations, including ethnic minorities, immigrants, and refugees. This approach sought to leverage existing partnerships and community trust of CBOs to achieve the broader program’s objectives. CBOs addressed health care access and health literacy for Limited English Proficiency persons (
Sub-Study Measures and Data Collection
Data for this sub-study are derived from a brief voluntary interviewer-administered survey conducted with CBO representatives at the conclusion of the service delivery period. This analysis explores how the AHL initiative could have better addressed communities’ and CBO grantees’ needs. In addition, participants were asked to reflect on how academic institutions could better support partnerships with CBOs and local government and to share lessons learned from this initiative. Finally, participants were asked to provide comments if not previously covered; responses were included in this analysis if pertinent to the aforementioned topics. Preliminary findings were shared with grantees during a member-checking event to obtain confirmation, clarification of findings, or further details not previously mentioned; any comments were documented verbatim and are included in this analysis (Koelsch, 2013). This evaluation was approved by the university’s Human Subject’s Research Protections Program.
Participants
To ensure consistency in the interview process, the first author interviewed the directors, co-directors or other representatives (
Qualitative Analysis
We utilized the “Coding Consensus, Co-occurrence, and Comparison” method (Willms et al., 1990), which is based in grounded theory methods (Glaser et al., 1968). Participants’ responses, ranging from a few words to multiple phrases, were imported into an Excel spreadsheet for analysis. Preliminary codes were assigned to text segments ranging from phrases to several paragraphs. This open coding was based on a priori (deductive) and emergent (inductive) topics (Corbin & Strauss, 2014). Some responses were assigned to multiple themes. The preliminary results were shared with participants during one session and their feedback regarding the coding or interpretation of the findings is reflected in Tables 1–3—these provide the main themes, sample sizes for each theme, sub-themes, and illustrative quotes (Carlson, 2010; Miles & Huberman, 1994).
Community-Based Organization Grantees’ Perspectives on How the Local Advancing Health Literacy Program Could Better Address the Needs of Grantees (n = 20 Participants for 12 Organizations), 2023.
Lessons Learned From Participating in the Local Advancing Health Literacy Program That May Benefit Other Communities, Policy Makers and Researchers Working to Advance Health Literacy Among Ethnic and Underserved Communities, Perspective of Community-Based Organization Grantees (n = 20 Participants for 12 Organizations), 2023.
What Academic Institutions Can Do To Support Collaborations Between CBO’s and Academic Partners, Perspective of Community-Based Organization Grantees (n = 20 Participants for 12 Organizations), 2023.
Results
Local Health Literacy Programs Can Address Communities’ Needs
Table 1 describes how the local AHL initiative can respond to communities’ needs, highlighting community-engaged strategies for addressing challenges faced by participating CBOs. Regarding the “Resource Needs” theme, respondents indicated that CBOs can benefit from pre-award trainings, such as grant-writing to increase competitiveness for funding as well as post-award activities pertaining to implementation and evaluation activities (see 1.1). CBOs reported needing multi-year funding to support program development and implementation that would have a lasting impact on health literacy goals (see 1.2). Since CBOs vary in their size and in-house resources, grants that fund tangible resources (e.g., computers), staff trainings, or which provide foundational resources for limited English proficiency persons can be especially helpful to smaller CBOs (see 1.3). Student involvement in health literacy programs was viewed favorably, though student roles, time, and nature and level of supervision expected of CBOs should be clearly defined at the outset by partnering universities (see 1.4). In addition, one CBO reported that it is important to confirm that bilingual students’ language skills align with the CBO and community member cultural and linguistic needs (see 1.4).
The second emergent theme pertained to evaluation activities. CBOs reported that having strong evaluation protocols would benefit grantees and their communities and they identified a need for detailed communications from grant-makers vis-à-vis type of data needed, timelines, and grant-related procedures when initiating a new program (see Table 1, 2.1). CBOs also consistently identified a need for assistance in developing data collection systems, including technical assistance to select appropriate outcome measures and data collection tools to ensure internal program monitoring (see 2.2). CBOs working with external evaluators would like real-time access to their data dashboards. Finally, CBOs indicated that longitudinal evaluations are needed to document the long-term impacts of investments in health literacy programs that integrate community-based approaches and collaborations with CBOs (see 2.3).
Lessons Learned From Participating in the AHL Grant Program
CBOs reflected on lessons learned from participating in this initiative; Table 2 describes emergent themes and three sub-themes. CBOs consistently noted the need for additional resources, including time to navigate organizational administrative processes related to program planning and implementation (e.g., coordinating across departments); grantees that launched new programs needed additional time to recruit and train new staff and develop client-facing materials (see 1.1). CBOs’ familiarity with health literacy concepts varied, thus, having access to foundational materials that could be tailored, including in-language resources, could facilitate program implementation (see 1.2). Finally, CBOs noted that funding time-limited programs may constrain building health literacy in the community; instead, sustained funding may support long-term change and foster trust between CBOs and communities served (see 1.3).
Regarding community engagement and capacity building, CBOs noted that cross-grantee collaboration can benefit CBOs and the communities they serve; information can be shared across CBOs and community members can be better served through cross-agency referrals to holistically address social determinants of health and related needs (see 2.1). CBOs noted that CHWs (e.g.,
CBOs consistently expressed a strong interest in assessing programmatic outcomes, noting that CBOs and CHWs can help funders and programs, respectively, achieve their intended outcomes due to being credible messengers and trusted sources of information and resources for the diverse communities they serve (see 3.1). Furthermore, grants that require structured monitoring and evaluation activities can enhance CBOs’ abilities to achieve their immediate and long-term goals (see 3.2). Finally, lessons learned related to policy emerged; some participants reported that data can be leveraged to inform policy-makers about the unique needs of population subgroups so that funding streams can be designed to achieve the greatest impact (see 4).
Academic Institutions Can Support Collaborations With CBOs
Three main themes emerged when participants were asked to reflect on how academic institutions can support partnerships with CBOs (see Table 3). The importance of meaningful community engagement and partnership with CBOs and community members was a significant theme. Participants indicated that engaging early and often with the community can support relationship-building and ensure that academic partners are familiar with the community’s needs and that community needs are centered during intervention planning, delivery, and evaluation. This approach would facilitate multisectoral responses to funding opportunities, avoid duplication of efforts, support the development of students whose training has a community-focused lens, and help inform public policy (see 3.1). Meaningful relationships between academic institutions and CBOs can be cultivated and strengthened through regular meetings that involve bi-directional information sharing, co-leadership and networking opportunities (see 3.2).
Regarding grantsmanship and funding, participants mentioned that they face challenges in competing for grant funding due to limited capacity and experience in grantsmanship. They noted that this is an area of expertise for universities due to the resources needed to compile a successful application (e.g., federal DUNS number, fiscal management teams, use of data in proposals, evaluation expertise in pre- and post-award phases) (see 2.1). CBOs felt that they can benefit from technical assistance and training to support all aspects of grant procurement (e.g., gaining awareness of funding opportunities, understanding RFPs, determining how projects of interest align with funders’ goals, proposal development and post-award grants management and evaluation support, sustainability planning). In addition, CBOs reported a need for flexible funding to address health literacy projects’ diverse needs (e.g., staffing, training, program supplies, evaluation support) (see 2.2). CBO representatives expressed that universities that regularly engage with CBOs can readily disseminate funding opportunities and strategize to build effective partnerships (see 2.3). Finally, while CBOs vary in their scope and size, participants reported an interest in having universities share expertise by supporting capacity-building efforts around digital literacy and evaluation for local nonprofits (see 3.1, 3.2, and 3.3).
Discussion
The COVID-19 global public health crisis underscored the need for community-centered and led health literacy interventions that build well-being among ethnic minority and structurally underserved communities (Bin Naeem & Kamel Boulos, 2021). CBOs are recognized as trusted partners that often engage the most disenfranchised individuals’ while addressing the social determinants of health, including misinformation, by helping individuals overcome barriers to health-supporting resources (Abbas, 2021; Abel & McQueen, 2020; Singu et al., 2020; Tejativaddhana et al., 2020; U.S. Department of Health and Human Services Office of Minority Health, 2022). This project demonstrated that CBOs can be deeply involved in all aspects of funding procurement and dissemination as well as program implementation and evaluation, regardless of ability to compete directly for funding. Ensuring that partnerships prioritize and require equal and shared leadership among CBOs and their governmental and academic collaborators can provide substantial mutual benefits for organizations and the communities they serve. This article describes lessons learned regarding successful partnership-building with academic institutions from the perspective of CBOs that implemented health literacy programming during the COVID-19 pandemic. CBOs consistently expressed a desire for long-term relationships with academia, targeted technical assistance and capacity building, and greater access to health literacy resources; implications for policymakers, funders, and academia are described below.
This study found that CBOs value long-term relationships with their partners to create a shared understanding of the community’s needs, institutional infrastructure, assets, goals, or resource needs. By investing in long-term partnerships, academic institutions and CBOs can contribute their strengths to efficiently respond to funding opportunities in real time and co-develop, and implement community-centered public health programs. This study illustrated how one academic institution with long-standing relationships with CBOs and local government mobilized all parties to obtain and disseminate funding, coordinate the network and its activities, and share resources in a tailored manner that addressed the unique challenges and needs faced by local CBOs. Through active co-leadership and capacity building with CBO partners, this program intentionally overcame funding acquisition and program implementation barriers previously described by CBOs. One recommendation is for policy makers and funders to develop mechanisms that support
CBOs reported an interest in receiving technical assistance to support grant-writing as well as pre- and post-award grants management (e.g., reporting, fiscal management, evaluation activities). Policy-makers and funders can support these processes by providing flexible funding to address CBOs’ diverse needs (Israel et al., 1998). Funders can also develop capacity-building activities to support grant procurement from CBOs or simplify grant applications to ensure equitable access to funding that includes CBOs of all sizes. The initiative described here supported local CBOs by providing pre-award consultations to confirm eligibility, application preparation workshops, and post-award grant management workshops that address sustainability planning. These activities can be implemented by funders seeking to fund grass-roots organizations or academic partners in the target community.
In this project, CBOs consistently identified a need for funding mechanisms that recognize the intensive nature of community-centered work. Short funding cycles were considered a barrier to achieving long-term gains in community health literacy. For example, CBOs starting new programs may require longer funding periods to account for planning and implementation of new programs (e.g., staffing, training, evaluation). In contrast, CBOs that receive funding for existing programs or expansion of services may have the infrastructure needed but require funding for emergent line items (e.g., new staffing, training, distribution of community-facing resources). In addition, short-term funding cycles may adversely affect CBOs who are often trusted messengers in the community by breaking the community’s trust due to discontinuation of services, including from funders changing agendas. Funders and academic partners should explore community-centric methods to ensure programmatic sustainability in order to achieve immediate and long-term public health goals.
As the number of languages spoken across the United States increases, linguistically diverse communities also need access to evidence-based in-language resources. For example, ~20% of households with Spanish-speakers are limited in their English language skills, and households with persons who speak Chinese (33%), Korean (32%), or Vietnamese (31%) reported a greater proportion of limited English proficiency (Dietrich & Hernandez, 2022). Public and privately-funded organizations can support communities and CBOs by creating and disseminating in-language health literacy toolkits and resources. However, funders must consider that cultural and linguistic tailoring of materials requires input from the community to ensure cultural relevance. Community members supporting cultural adaptation of materials should be equitably compensated for their time and cultural expertise and these efforts should be accounted for by funders (Alegria et al., 2004).
CBOs in this partnership consistently reported a need for evaluation support. Funders and academic partners can support CBOs by leading trainings addressing the use of quantitative and qualitative evaluation strategies and increasing familiarity with free or low-cost data collection tools that can be used during the pre- and post-award phases (Israel et al., 2001). Funders can also provide CBOs evaluation support (e.g., create evaluation tools for common use among grantees; provide access to data collection tools and training on how to use them). Academic partners can train CBOs on interpretation of program data for quality improvement of current services and to support future grant-writing efforts. Communities of practice define learning as a social process that considers cultural and historical factors (Farnsworth et al., 2016). Funders can seek to build community among grantees by supporting peer-to-peer learning that facilitates information sharing, networking, and cross-agency referrals (Gilmer et al., 2021; Lansing et al., 2023; Nicolini et al., 2022). Altogether, these strategies can fortify the non-profit sector while enhancing workforce development (Israel et al., 1998; Krieger et al., 2002).
Academic institutions play a key role in training future practitioners, academics, and leaders who are invested in their communities. Universities often invite CBOs and governmental agencies to host student learners so they may apply academic concepts in real-life settings to the benefit of host agencies and their community (Burgos et al., 2015). CBOs in this project reported needing greater communication regarding the universities’ expectations, students’ skills, and resources needed to support training. Academic institutions and host sites should discuss logistical and training factors, such as supervision and mentorship expectations, co-development of student tasks, adherence to ethical standards, or how success is defined prior to student placements (Worrall, 2007). Ongoing communication between academia and CBOs can help partnerships flourish and avoid overburdening CBOs that may be understaffed or under-resourced.
Interpretation of this evaluation should consider the following. CBOs’ needs may have varied from those described here if the funding period had been extended. The interviews were conducted with persons holding leadership positions; future evaluations should include the views of front-line staff to determine how CBOs can best be supported. Nevertheless, this evaluation sheds light on the experiences and needs of CBOs collaborating with local governmental and academic partners during the COVID-19 pandemic. Findings may inform future community–academic collaborations, including during public health crises.
Conclusion
This evaluation revealed the value and importance of creating multisectoral partnerships that engage CBOs as co-leaders to address public health issues during the COVID-19 pandemic. Findings shed light on strategies that academia, funders, and policy makers can pursue as they partner with CBOs to achieve greater reach and impact. For example, the authors will disseminate findings to academic partners as this information can inform future collaborations by highlighting topics that are important to community agencies and critical for partnership success. For those who are new to multisectoral partnerships, it will be key that these topics are discussed at the outset of grant-writing, and revisited throughout program planning, implementation and evaluation periods. Importantly, other partnerships may have diverse needs or priorities than those noted here, and these will emerge with clear and regular communication. This proactive approach can help all partners as appropriate staff and resources can be identified early and deployed throughout the funding period; in this way, all parties can be better positioned for a successful collaboration, particularly during periods of social, public health and economic change.
Other entities can also take action based on the findings noted here. Policy makers and funders can prioritize long-term multisectoral partnership-building, tailored training and capacity building of CBOs, subject-specific resource sharing, and ensuring that funds and grant timelines are realistic to achieve intended outcomes and facilitate institutionalization and sustainability of successful programs. Academia can proactively address these components in their relationships with CBOs to ensure equitable partnerships. CBOs can educate academic partners by facilitating site visits and participation in community events to create a shared understanding of partners’ and communities’ resources and goals. These strategies may aid in the development of productive long-term relationships, information and resource transfer, and skill-building across all partners, potentially fostering equitable and resilient communities that benefit all.
Footnotes
Acknowledgements
The authors are grateful to their colleagues throughout San Diego County who shared their experiences with them and gave them the opportunity to reflect on this program. They extend our appreciation to the grantees of the
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was supported by Award Number 1CPIMP211287-01-00 issued by the Office of the Assistant Secretary for Health of the U.S. 42 Department of Health and Human Services (HHS) with 100% funded by the Office of Minority Health/OASH/HHS. The contents are solely the responsibility of the author(s) and do not necessarily represent the official views of, nor an endorsement by the Office of Minority Health/OASH/HHS, or the U.S. government. The project described was also partially supported by the National Institutes of Health, Grant UL1TR001442. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. Dr Victoria Ojeda’s effort was also partially supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award Number R01MD016959. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
