Building an Ecosystem of Community-Led Public Health

(Photo courtesy of Civic Nation)

When COVID-19 vaccines first started rolling out, a common story emerged—that people from disadvantaged communities, particularly communities of color, were not going to get vaccinated. That deeply rooted mistrust and lack of access would be impossible to overcome. And that the neighborhoods that had borne the brunt of the pandemic would be left behind, again. What actually happened is a story of community-led efforts whose determination, resourcefulness, and love won over community members, brought down access barriers, and shrunk the vaccine equity gap–saving countless lives and families. The COVID-19 vaccine efforts demonstrate a vastly under-recognized resource not only in combating the ongoing pandemic but in tackling health equity. If we want to fully address our many public health crises and achieve equity in our nation’s health, we must choose to invest and do the hard work of actually centering community in the work.

Many people recognize—theoretically—the importance of community in these efforts. Actually putting community first requires a serious commitment, deep humility, and flexibility that allows communities to decide what they need and how best to do the work. It requires providing them the support they need to succeed. Below, I share three key lessons from Made to Save, an 18-month COVID-19 vaccine equity initiative of Civic Nation that worked with more than 1600 organizations to have millions of conversations rooted in empathy and equity to build trust and help hardest-hit communities get their shots.

Over the course of this outreach and education campaign, Made to Save grantees contacted 5 million individuals and had more than 625,000 conversations in at least 21 languages in communities of color that were high on the Social Vulnerability Index or otherwise determined to be high-need communities. In those counties, the gap in vaccination rate shrank from 5 percent less than the national average to 2 percent less than the national average. In nearly every month of the grant period, vaccination rates in those counties increased at a steeper rate than in their states overall. Moreover, from a capacity-building standpoint, groups reported that Made to Save’s grants and support were central to their work: 94 percent reported increased capacity, 81 percent reported more collaborations, 75 percent reported increased visibility, and 65 percent felt they had improved connections to the public health infrastructure. Similarly, health care and public health partners shared that they were able to gain a greater understanding of community needs and develop new partnerships for their longer-term work on health equity.

Lesson 1: Prioritize Funding for Trusted Community Leaders and Organizations

We must prioritize funding for the people communities actually trust–especially when those communities have too many reasons to be wary of the system. In too many public health efforts, the investment in community partners is dwarfed by advertising and research budgets, or goes to groups that are not actually a part of the community. Among Made to Save’s 110 grantees, over 80 percent were led by executive directors of color, most of whom came from the communities they served. With just under $7 million in investments, these organizations hired community health workers and peer educators, organized hundreds of vaccination events, and reached out to millions of individuals in hard-hit communities.

These community-based organizations drew upon deep wells of understanding and networks of relationships to tailor vaccine outreach to their local communities in ways that would be impossible with a top-down one-size-fits-all approach. The Arkansas Coalition of Marshallese recognized that in their matriarchal culture, focusing their campaign on moms was the most effective way to reach the entire community. They also tapped into trust built from years of advocating for the community. Southern Echo understood the racism that too many community members encountered in health care settings, so they partnered with Central Mississippi Health Services, which had a reputation for providing high-quality care and brought Black health care providers to give shots and answer people’s questions. Vietlead in Philadelphia tapped into the strong oral storytelling traditions of their community to spread messages by word-of-mouth and through influential people in the community sharing their own stories.

Beyond simply understanding their communities, these community-based organizations have staff and volunteers with a deeply personal sense of commitment to those they serve, building trust through relationships over years and even decades before the pandemic. They organized vaccination clinics and outreach events on weekends and after-hours, knocked on doors to talk to neighbors, drove elderly neighbors to vaccine appointments, checked in on neighbors after a hurricane, and even gave out their personal phone numbers to make sure their community members had someone to turn to.

Lesson 2: Provide Trusted Messengers With the Training, Support, and Resources They Need

Providing a grant is not often sufficient to enable success, especially in this case where the pandemic was constantly shifting, the work of COVID-19 vaccine outreach was new to everyone, and the most important trusted messengers had few resources to address the overwhelming needs in their communities. In the Made to Save campaign, community organizations tapped into a centralized hub to help them with media outreach, social media and text campaigns, training for staff and volunteers, data on pandemic conditions and the latest messaging research, and office hours where they could ask a doctor about any vaccine questions that had come up. These supports were tailored to the requests and needs shared by the people doing the work every day.

Many staff and volunteers of community organizations expressed nervousness about whether they were qualified and equipped to talk with friends and neighbors about the vaccines. Knowing that one-on-one conversations about vaccination would be central to reaching people, Made to Save worked with partners to develop the “TEO Method” for vaccine conversations. Instead of telling people what to do, the idea was to center the experience of people who were not yet vaccinated. In these conversations, we first built trust (T) by listening to understand and asking questions without judgment. Second, we expressed empathy (E) and connected on values, acknowledging and relating to what the person was sharing and avoiding making assumptions. Finally, we helped them find their own (O) reason for getting vaccinated. We helped identify and address their concerns without attempting to dictate their thoughts and actions. The TEO method is based on Motivational Interviewing, a direct but non-confrontational approach that has been found effective in health decision contexts and can be broadly applied beyond COVID-19. This approach was not the fastest way to have these conversations but was much more effective at building trust than simply answering questions and throwing facts at people.

Communicating with people effectively also required having culturally relevant resources in people’s primary language, which proved to be a top barrier to getting vaccinated. Made to Save and partners worked in at least 21 languages, translating materials into Spanish, Chinese, Korean, Vietnamese, and Haitian Creole. Grantees and partners translated materials into dozens more languages, including Maya Ixil and Pacific Islander languages, taking care to have community members review the translations to make sure they were accurate and culturally appropriate.

All of this support enabled community organizations to focus on the hardest work of reaching their communities one person at a time. With this support, Uma Tulsa helped bring Tulsa’s Hispanic population from having some of the lowest vaccination rates in the country to now one of the highest through Spanish-language information, dozens of events at community locations, and more than 140 visits to small businesses in the highly diverse East Tulsa – reaching more than half of Tulsa’s Latinx population.

Lesson 3: Build a Broad and Inclusive Community of Practice That Puts Communities At the Center

It would be too easy for a national vaccine campaign to be very siloed, with different entities in different sectors grappling with similar challenges on their own. It would also be understandable for organizations to say that the campaign was solely the job of public health departments. Yet many organizations wanted to do their part and had unique influence in their communities.

Thus, Made to Save created a National Vaccine Equity Hub where health care, public health, businesses, schools, faith groups, and community groups could come together as equals, each sharing their unique perspectives and resources, successes, and challenges. Together, they connected with top decision-makers at the FDA, CDC, and White House COVID-19 Response Team, learned how to communicate effectively about the latest variant or surge, identified access barriers and solutions, developed a greater appreciation for the work happening at the community level, and found areas of collaboration to strengthen their ability to reach people.

Challenges in Truly Centering Community

Made to Save was designed to address a short-term challenge in a manner that builds for the long-term, leaving the entire ecosystem stronger. That was at the core of why we invested in existing community-based organizations, centering their needs over a top-down approach. Even with that orientation as our foundation, our community partners taught us many lessons on how to make it a reality.

First, we created suites of services for our grantees and other partners that we constantly reevaluated. Some services were well-received, like our weekly updates and our empathy-focused training on how to talk to friends and family about the vaccine. Others were not as helpful. For example, we organized some weeks and months of action thinking they would spur action at the local level. Instead, our partners shared that they needed to be able to plan and execute their outreach and events based on their own schedules that took into account local factors and capacity.

Some services needed to be adapted to truly center the community. We asked one partner if we could conduct focus groups with their promotoras (community health workers) to learn more about sources of mistrust in health care. However, they were hesitant because researchers had often surveyed and interviewed their community members and then disappeared into academia without any feedback or benefit to the community. Instead of leading or even attending the focus groups, we helped that organization conduct its own focus groups and share the findings. It turned out that the promotoras found it to be a valuable experience to delve into the issue amongst peers.

Second, our expectations as a funder required constant refinement and flexibility to account for the fact that many of our grantees had few paid staff and their hands entirely full serving their communities. Instead of a typical request-for-proposals process, we started by identifying trusted organizations that were known for getting things done and being deeply committed to their communities. They were experts in their communities and could connect with people in ways that no national organization could. Yet few had dedicated staff to manage grants, and many were overlooked by other funders who expected polished proposals.

We found that our partnership needed to start with the application. If an initial proposal was not quite sufficient, we worked with the prospective grantees hand-in-hand to develop a proposal that would fit their needs and capacity. Once we decided to fund a group, we carried out an assessment to identify their needs and figure out the best support system for that organization; we also needed to figure out how best to support those grantees and gather their feedback without being too burdensome. We started with a very rigorous feedback loop with weekly reports of various metrics. Our grantees shared that the time required for those reports was siphoning off too much time that staff could spend on their actual program. We therefore reduced the number of metrics and focused more on qualitative reports (stories and photos). Those qualitative reports proved to be incredibly rich and informative while having the side benefit of making it easier for us to draw attention to our grantees’ work.

The collaborative nature of the grant-making process helped our grantees succeed. Several grantees leveraged Made to Save’s funding and support to gain credibility and other grants for their short- and long-term work.

Making a Sustained and Scaled-Up Commitment

This effort provides a glimpse at how we can build a better public health system that serves the diversity of our nation. Many of our most difficult public health crises—including mental health, substance use, chronic diseases like heart disease and diabetes, and the growing impacts of climate change—are disproportionately felt in communities of color and underserved areas that are too often left out of the room when solutions are discussed and designed. Many of our biggest challenges are rooted in or exacerbated by mistrust due to systemic inequities—where building trust is a crucial first step.

The time is now to rethink public health, not as the quiet purview of a health department, but as an ecosystem that starts in communities. That approach is harder and more complex than a top-down one. Yet if we want to stay ahead of COVID-19 and effectively address our many other public health challenges and health inequities, we must double down on the lessons learned in the past year and scale up these solutions to put communities first.

Read more stories by Alice T. Chen.