Insights From Community Organizations Collaborating With Government and Academia to Foster Health Literacy

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

health literacy health disparities COVID-19 community-engaged research technical assistance racial and ethnic minorities refugees immigrants

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: Advancing Health Literacy to Enhance Equitable Community Responses to COVID-19 (US Department of Health and Human Services Office of Minority Health, 2022). Local governments were invited to submit proposals for evidence-based demonstration projects that implemented culturally appropriate approaches to support COVID-19 testing, contract tracing, and other measures to mitigate the pandemic. The grants were intended to serve ethnic minorities, rural communities and other socially vulnerable populations, without duplicating the federal government’s efforts.

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 Advancing Health Literacy (AHL) initiative; this program is described in detail below. Specifically, this article documents CBOs’ views on how the local initiative could have better supported grantees’ needs, how academic institutions can support successful collaborations with CBOs and lessons learned that may inform future health promotion efforts that rely on partnerships between local government, CBOs, and academia.

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 AHL funding. Of note, many of the partnering CBOs had previously collaborated with the coordinating university and they proposed that the university’s Center for Community Health—an entity with deep community ties and a history of co-leadership with community—lead the application to meet the diverse needs of network partners. It was expected that the initiative would create a community of partners with a shared vision to build health literacy locally; provide tailored technical assistance and resources directed toward health literacy; and support infrastructure, including capacity-building and tailored support for CBO partners in topics, including grant-writing, fund management, and evaluation support services. Monolingual CBOs might have been excluded due to language barriers but through this initiative were funded in part because of linguistic support from the university. These are challenges previously faced by CBOs in the network and which some CBOs described as barriers to competing for and obtaining federal funding.

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 (n = 5 organizations), nutrition health literacy (n = 5 organizations), and mental health literacy (n = 3 organizations). The funded projects were not defined as research studies. Instead, CBOs provided information, services, resources, and other community supports, often engaging community health workers (CHWs), including Promotoras (health promoters), as trusted messengers to build health literacy during the COVID-19 pandemic. Throughout the funding period and as part of the project’s capacity building efforts to address challenges faced by participating CBOs, the lead coordinating university convened CBOs and provided technical assistance through monthly one-on-one video-conferencing meetings between grantees and their program officer—a role held by the coordinating university’s staff. One in-person meeting was held. Per the funder’s requirements, data were collected by CBOs to support quarterly reporting and overall program evaluation. A second university led the evaluation and provided evaluation-focused technical assistance to CBOs.

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 (n = 20 persons) of funded CBOs (n = 12 organizations) which ranged from grass-roots organizations to larger institutions, including an FQHC and a homeless shelter. Interviews were conducted between April and June 2023 and lasted ~60 minutes; participants’ responses were entered verbatim into the survey software by the interviewer. Eleven interviews were conducted in English and one in Spanish. The interviewer [first author] and co-author [senior author] are bilingual and questions were translated during the interview; responses were transcribed verbatim in Spanish; illustrative quotes were translated into English by the interviewer and reviewed by co-authors for accuracy.

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).

Table 1.

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.

Theme and summary	Illustrative quotes
1. RESOURCES (n = 12) 1.1 Trainings (n = 2): CBOs may need ongoing trainings, including a “Grants 101” to address post-award grant management 1.2 Funding and Time (n = 6): Multi-year funding is needed (for community’s needs, new staff salaries, to achieve goals, to train community workers) 1.3 Tangible resources (n = 2): a. The program generated tangible and intangible resources that will help communities b. In-language resources need to be appropriate to the target community from the beginning of the grant processes/expectations 1.4 Student participation (n = 2): Ensuring students (including bilingual students) are a good fit for the CBO, understand the work assigned is important, and CBOs need to understand the university’s expectations of students and CBO	1.1 . . . I would have preferred ongoing trainings to support engagement because it was a new program; for example, providing trainings once per month 1.1. I personally need training, and this is our first restricted grant, and it has been difficult for me to ensure that things are being spent properly. It would be cool if you have a basic Grants 101 since this grant is a lot more accountable—I have not previously had to do meetings and this is a good thing—previously I just received the funding without restrictions. I can’t give enough Kudos to [Program Officer]—she has been amazing to us! 1.2. Multi-year funding approach would be very useful; this program is not funded for the coming year, and it will be absorbed into general operating expenses in order to continue. This program allowed us to create a new role which was funded through the program, and [former] participant’s time is partially funded as well, so now [we are] finding new resources to fund these components through current funds 1.2 A longer time period—it takes a while to figure out the right formula- it wasn’t even 12 months to get all of the [grant] pieces aligned. 1.3 We did not know how much training we needed to give to the community (we thought community members were on stage 2 of understanding the internet and how to navigate it) whereas they are on stage 1— [they need help with] how to turn on the computer, how to create an email, etc. So, if you look at our original proposal, we said we would provide 4 trainings and have actually provided 14 trainings. 1.3 Recognizing that the staff needs to work in Spanish, [it would be highly beneficial] if all documents and materials were provided in Spanish from the inception of the grant. This should be a standard operating procedure. Speaking Spanish is not equivalent to comprehending it, and having the most accurate translation is crucial. We don’t want to be excluded in the future, and we now understand the need for a bilingual evaluation expert on board. [Translated from Spanish] 1.4 Communication—with [monolingual] groups like ours . . . For example, when we expressed ourselves, we assumed that they [bilingual students] understood us but when they did the work, it was not what we had requested and intended. [Translated from Spanish]
2. EVALUATION ( n = 8) 2.1 Clear Communication (n = 2): Academic partners need to clearly communicate regarding the evaluation process (timelines, data needed, software used, outcomes measured) 2.2 Data Dashboards and Collection Tools (n = 3): CBOs need to understand the outcomes being measured and how to design data collection tools so the data can be accessed internally and also to have it made available to grantees at monthly check-ins 2.3 Time (n = 3) is needed to assess long-term impacts of programs	2.1 We had a delay in the evaluation and I wish we could have done it from the beginning– that could have helped us. I had made evaluation questionnaires and when they added the data to the system Survey Monkey, the questions were changed and they had to embed questions after [evaluation team] was added. . . That was a delay for us– we had to translate all of the surveys into 4 languages. They gave us the time to switch and then things went more smoothly 2.2 One thing would be software to simplify the data that we collected; we wanted to have it internally as an excel spreadsheet and also give it to the evaluation team and it would be good to have a better way to look at the data as a whole within our organization. We compile it manually and we asked the evaluation team how they analyze it to learn about how to analyze the data more efficiently 2.3 Looking at advocacy work is a long-term goal/process, so that is a conversation that was started w/ the evaluation team but did not make much progress and is an area of interest

Theme and summary

Illustrative quotes

1. RESOURCES (n = 12)
1.1 Trainings (n = 2): CBOs may need ongoing trainings, including a “Grants 101” to address post-award grant management
1.2 Funding and Time (n = 6): Multi-year funding is needed (for community’s needs, new staff salaries, to achieve goals, to train community workers)
1.3 Tangible resources (n = 2):
a. The program generated tangible and intangible resources that will help communities
b. In-language resources need to be appropriate to the target community from the beginning of the grant processes/expectations
1.4 Student participation (n = 2): Ensuring students (including bilingual students) are a good fit for the CBO, understand the work assigned is important, and CBOs need to understand the university’s expectations of students and CBO

1.1 . . . I would have preferred ongoing trainings to support engagement because it was a new program; for example, providing trainings once per month
1.1. I personally need training, and this is our first restricted grant, and it has been difficult for me to ensure that things are being spent properly. It would be cool if you have a basic Grants 101 since this grant is a lot more accountable—I have not previously had to do meetings and this is a good thing—previously I just received the funding without restrictions. I can’t give enough Kudos to [Program Officer]—she has been amazing to us!
1.2. Multi-year funding approach would be very useful; this program is not funded for the coming year, and it will be absorbed into general operating expenses in order to continue. This program allowed us to create a new role which was funded through the program, and [former] participant’s time is partially funded as well, so now [we are] finding new resources to fund these components through current funds
1.2 A longer time period—it takes a while to figure out the right formula- it wasn’t even 12 months to get all of the [grant] pieces aligned.
1.3 We did not know how much training we needed to give to the community (we thought community members were on stage 2 of understanding the internet and how to navigate it) whereas they are on stage 1— [they need help with] how to turn on the computer, how to create an email, etc. So, if you look at our original proposal, we said we would provide 4 trainings and have actually provided 14 trainings.
1.3 Recognizing that the staff needs to work in Spanish, [it would be highly beneficial] if all documents and materials were provided in Spanish from the inception of the grant. This should be a standard operating procedure. Speaking Spanish is not equivalent to comprehending it, and having the most accurate translation is crucial. We don’t want to be excluded in the future, and we now understand the need for a bilingual evaluation expert on board. [Translated from Spanish]
1.4 Communication—with [monolingual] groups like ours . . . For example, when we expressed ourselves, we assumed that they [bilingual students] understood us but when they did the work, it was not what we had requested and intended. [Translated from Spanish]

2. EVALUATION ( n = 8)
2.1 Clear Communication (n = 2): Academic partners need to clearly communicate regarding the evaluation process (timelines, data needed, software used, outcomes measured)
2.2 Data Dashboards and Collection Tools (n = 3): CBOs need to understand the outcomes being measured and how to design data collection tools so the data can be accessed internally and also to have it made available to grantees at monthly check-ins
2.3 Time (n = 3) is needed to assess long-term impacts of programs

2.1 We had a delay in the evaluation and I wish we could have done it from the beginning– that could have helped us. I had made evaluation questionnaires and when they added the data to the system Survey Monkey, the questions were changed and they had to embed questions after [evaluation team] was added. . . That was a delay for us– we had to translate all of the surveys into 4 languages. They gave us the time to switch and then things went more smoothly
2.2 One thing would be software to simplify the data that we collected; we wanted to have it internally as an excel spreadsheet and also give it to the evaluation team and it would be good to have a better way to look at the data as a whole within our organization. We compile it manually and we asked the evaluation team how they analyze it to learn about how to analyze the data more efficiently
2.3 Looking at advocacy work is a long-term goal/process, so that is a conversation that was started w/ the evaluation team but did not make much progress and is an area of interest

Table 2.

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.

Theme and summary	Illustrative quotes
1. RESOURCES FOR CBOs ( n = 7): 1. CBOs require more time to plan and implement new programs and engage community in new programs 2. CBOs may need access to health literacy resources [newsletters, toolkits] that can be tailored by for their community 3. Sustained funding is needed to ensure ongoing impact and that the community’s trust is not broken 2. COMMUNITY ENGAGEMENT AND TECHNICAL ASSISTANCE ( n = 9): 1. Cross-grantee collaboration could have supported broader impact and cross-learning 2. Community health workers can bring knowledge and resources to the community but may need specialized training to do their job effectively 3. Underserved communities have multiple needs but will engage if they are provided with information and tailored resources 3. OUTCOMES ( n = 4): 1. Community organizations can engage community members as credible messengers to increase positive health outcomes. 2. Structured programs that require monitoring and evaluation can benefit the CBOs 4. POLICY ( n = 3): Communities are diverse; policy-makers can be educated through data	1.1. . . . This whole project was a brand new—which is why I emphasize needing more time—it took time to get the word out and the incentives—it’s different from adding to an existing program rather than starting from the ground up. . . . We had to construct a new everything! 1.2 For example, Covered California has a toolkit—it would be helpful to have a health literacy toolkit that can be presented to the organizations as a starting point for their own work so they can adapt it to their organization. 1.3 In terms of capacity building and within the short time frame, we touched a lot of lives and people, but what will happen when the funding is gone—how can we continue the project which has been successful? It takes a while to build trust in the community and constituents– once that trust has been built, we want to let the community know that we are there to support you. . . . 2.1 I have also learned that collaboration with other like-minded agencies is a good thing—I tend to run solo—so I have learned to collaborate with persons that are also working in this area 2.2 [It is important to] improve the role of community health care workers (CHW) and increase their knowledge of the health care system through increased training because they have knowledge but they don’t know the health care system (for example, CHW was never in a clinic and does not understand how the clinic operates or understanding the Medicaid-Medicare patients). So, we give the CHWs a tour of the clinic as if they are the patient so they understand the processes and departments. For example, COVID-19 vaccination is for all but other vaccines are only for our patients 2.3 Of all things we learned, language is important, not just the English or Spanish, but also culturally didn’t fit. Some COVID materials were put out by the state of California but the partners said this is not how you would speak. The translations were awkward and not understandable. It recognized not just language fluency but literacy levels—it’s a reminder to be really mindful that materials need to be at a lower reading level for everyone to have access to them. 2.3 1—How to best access health literacy—a lot of people don’t know how to schedule appointments or select a provider. They didn’t understand insurance and how these companies work. 2—Persons with low health literacy experience major obstacles in navigating the health system. 3—Addressing the gap between health care challenges (for example language, region of service delivery) and the needs of underserved patients who have complex health related needs . . . 3.1 It’s not just about 100 or 200 persons; it’s about the impact we have. Our initial goal was to enroll 500 persons, but instead, we successfully enrolled 1,200 persons. When a promotora [community health worker] goes out into the field, it makes a significant difference. We are not only advocating for ourselves but also for other community groups. We want these groups to be appreciated for their direct work in the community. [Translated from Spanish] 3.2 . . . . I have learned that this format is more structured and accountability is good in this situation; there are things we don’t know about advancing health literacy 4. People in the underserved communities are not treated well- for whatever reason– this needs to be considered and part of the policy. . . . At the federal level and the city level underserved communities are not treated well. Everyone categorizes homeless but there are different levels of homeless—seniors can’t pay rent, because of domestic violence, chronic addictions, so many aspects but they are grouped into one and it’s unfair to each of these groups because they are grouped as one ‘community’ . . . They need to see the individual need of the person and not clump them together as the ‘underserved’. It needs to be broken down a bit and it starts at the top

Theme and summary

Illustrative quotes

1. RESOURCES FOR CBOs ( n = 7):
1. CBOs require more time to plan and implement new programs and engage community in new programs
2. CBOs may need access to health literacy resources [newsletters, toolkits] that can be tailored by for their community
3. Sustained funding is needed to ensure ongoing impact and that the community’s trust is not broken
2. COMMUNITY ENGAGEMENT AND TECHNICAL ASSISTANCE ( n = 9):
1. Cross-grantee collaboration could have supported broader impact and cross-learning
2. Community health workers can bring knowledge and resources to the community but may need specialized training to do their job effectively
3. Underserved communities have multiple needs but will engage if they are provided with information and tailored resources
3. OUTCOMES ( n = 4):
1. Community organizations can engage community members as credible messengers to increase positive health outcomes.
2. Structured programs that require monitoring and evaluation can benefit the CBOs
4. POLICY ( n = 3): Communities are diverse; policy-makers can be educated through data

1.1. . . . This whole project was a brand new—which is why I emphasize needing more time—it took time to get the word out and the incentives—it’s different from adding to an existing program rather than starting from the ground up. . . . We had to construct a new everything!
1.2 For example, Covered California has a toolkit—it would be helpful to have a health literacy toolkit that can be presented to the organizations as a starting point for their own work so they can adapt it to their organization.
1.3 In terms of capacity building and within the short time frame, we touched a lot of lives and people, but what will happen when the funding is gone—how can we continue the project which has been successful? It takes a while to build trust in the community and constituents– once that trust has been built, we want to let the community know that we are there to support you. . . .
2.1 I have also learned that collaboration with other like-minded agencies is a good thing—I tend to run solo—so I have learned to collaborate with persons that are also working in this area
2.2 [It is important to] improve the role of community health care workers (CHW) and increase their knowledge of the health care system through increased training because they have knowledge but they don’t know the health care system (for example, CHW was never in a clinic and does not understand how the clinic operates or understanding the Medicaid-Medicare patients). So, we give the CHWs a tour of the clinic as if they are the patient so they understand the processes and departments. For example, COVID-19 vaccination is for all but other vaccines are only for our patients
2.3 Of all things we learned, language is important, not just the English or Spanish, but also culturally didn’t fit. Some COVID materials were put out by the state of California but the partners said this is not how you would speak. The translations were awkward and not understandable. It recognized not just language fluency but literacy levels—it’s a reminder to be really mindful that materials need to be at a lower reading level for everyone to have access to them.
2.3 1—How to best access health literacy—a lot of people don’t know how to schedule appointments or select a provider. They didn’t understand insurance and how these companies work. 2—Persons with low health literacy experience major obstacles in navigating the health system. 3—Addressing the gap between health care challenges (for example language, region of service delivery) and the needs of underserved patients who have complex health related needs . . .
3.1 It’s not just about 100 or 200 persons; it’s about the impact we have. Our initial goal was to enroll 500 persons, but instead, we successfully enrolled 1,200 persons. When a promotora [community health worker] goes out into the field, it makes a significant difference. We are not only advocating for ourselves but also for other community groups. We want these groups to be appreciated for their direct work in the community. [Translated from Spanish]
3.2 . . . . I have learned that this format is more structured and accountability is good in this situation; there are things we don’t know about advancing health literacy
4. People in the underserved communities are not treated well- for whatever reason– this needs to be considered and part of the policy. . . . At the federal level and the city level underserved communities are not treated well. Everyone categorizes homeless but there are different levels of homeless—seniors can’t pay rent, because of domestic violence, chronic addictions, so many aspects but they are grouped into one and it’s unfair to each of these groups because they are grouped as one ‘community’ . . . They need to see the individual need of the person and not clump them together as the ‘underserved’. It needs to be broken down a bit and it starts at the top

Table 3.

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.

Theme and summary	Illustrative quotes
1. COMMUNITY ENGAGEMENT AND PARTNERSHIPS ( n = 6) 1. Universities need to have sustained and authentic relationships with CBOs to ensure projects meet the community’s needs, do not duplicate efforts, support student development as community-engaged leaders, and advance public policy 2. CBOs can benefit from 1:1 meeting with academics and partner-wide meetings for information sharing, networking to better serve the community	1.1 I go back and forth b/c our communities get evaluated all the time and provide feedback on what is going on in the community and there is not a result of this input provided—for example—this is how the changes have been made . . . The more we can build authentic relationships and the more that [UNIVERSITY] is participating in real time meetings to hear about what community is asking for– then relationships have been developed and community members can see how their participation is impacting a program or changes in the community. Sometimes there is duplication of existing efforts led by community or the efforts of the academic institution supersedes the interests of the community b/c the academics are taken more seriously by government agencies 1.1 I am thinking out loud. We have historically worked with foundations, donors, businesses, churches and an area that we have historically missed is universities and you have the next generation and I am excited to work with you to leverage your wisdom and to get the next generation of adults to get involved with community issues . . . We want community leaders to care about community and getting involved in something that means something to them. More of an ongoing relationship. It may result from quarterly volunteer positions (for ex having social workers volunteer in the program, or shadowing a social worker, or maybe an education piece where you invite different nonprofits to come in and discuss how they will address their community problems. We love to have volunteers, have people come out and to educate! . . . 1.2 Continuing the engagement and meetings helps. I do like having the individual engagement—because you can speak to the individual needs of your own organization, but having the collaborative come together is good because you can learn about other strategies that have been implemented that have been successful that your organization might implement. The universities can be the conduit to bring the CBOs together
2. GRANTSMANSHIP AND FUNDING ( n = 7) 1. Universities have the infrastructure to acquire funding and should secure flexible funding to support communities’ health literacy needs 2. Universities can engage CBOs to understand the intent of funding and relevance to their organization and evaluation to ensure programs meet the community’s needs, the funder’s objectives, and evaluation needs 3. Sustained partnerships with CBOs will ensure that a broader sector of organizations are aware of new funding opportunities	2.1 I think that academic institutions that are large and have capacity got a huge grant that our organizations could not have competed for or been awarded, and you were able to obtain it and deploy it to the community. 2.1 Looking for more funding! Funding is number 1—flexible funding that makes sense and meets the needs of the community—mental health is number 2, housing is number one, child development is number 3 and culturally competent services everywhere 2.2 I think we had to look up health literacy; we saw the funding opportunity several times and we didn’t think it was applicable to us; being clear on what is the funding and who it’s for in the RFP 2.3 More CBOs could be reached if the project intent is clear from the beginning. The preproposal conferences may have taken place before we learned of the opportunity. [Program Officer] held office hours and joining those helped us understand that we were a good fit for this project. Casting a wider net could help. I don’t believe the RFP conference was made available afterward (for later viewing) on a website
3. TECHNICAL ASSISTANCE ( n = 8) 1. Universities can bring their expertise to the community through technical assistance and trainings 2. Help CBOs build digital literacy to support their work 3. Help build CBO’s evaluation skillset (e.g., survey design, accessing/using data)	3.1 [Universities can] make experts available. I know all of the universities have adjuncts and they are looking for classes to teach and that they could have CBOs and be paid as if they are teaching a class . . . for a CBO this is professional development and workforce development 3.1 Also training on addressing future pandemics and natural disasters 3.2 . . . .For example, there is a QR code—I just learned what a QR code is and some of our clients are 80 years old, so there is a computer literacy issue 3.3 [Universities can] Provide relevant trainings: for example, how to use technology to collect surveys the way that large organizations do; now we have an evaluation consultant and she will help us with this since you have data and want data [Translated from Spanish] 3.3 A lot of people think that brining this knowledge that academic people know to the community . . . for example, the meeting we had with the mapping was very useful because we were not aware about [this resource] before and it helped me navigate the mapping system (Healthy Places Index) in specific towns. Now we can map our own city! Collect information about the cities that we serve—COVID vaccination, cases, diagnoses by gender

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., promotoras) are very successful in engaging community members, however, subject-matter expertise should not be assumed, and programs should prepare to tailor trainings regarding health literacy and other areas (e.g., eligibility for public programs, health systems operations) to enhance staff members’ effectiveness (see 2.2). Participants noted that community members will engage with services if they are accessible (i.e., geographically, in-language, appropriate, providing foundational information and resources) and tailoring of resources to local community’s characteristics should be considered to support resource uptake (see 2.3).

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 partnership development between academia and CBOs and evaluate factors, such as shared leadership, resource sharing, and bi-directional knowledge transfer.

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 Advancing Health Literacy to Enhance Equitable Community Responses to COVID-19 initiative. They are also grateful to the lead agency the City of Chula Vista, as well as government partners, including the San Diego County Health and Human Services Agency, UC San Diego Health, Supervisor Chairwoman Nora Vargas’ office, the consortium of cities engaged in this project, including Chula Vista, National City, El Cajon, Escondido, Imperial Beach, and La Mesa. They are especially grateful to their many community partners whose support and dedication to serving the community and advancing health literacy contributed to the success of this program. They wish them all continued success and good health.

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.

ORCID iD

Victoria D. Ojeda

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