Changing the Health System: A Community-Led Approach Rises in Rhode Island

This article is part of Community Strategies for Systemic Change, a series co-produced by the Local Initiatives Support Corporation (LISC) and NPQ. In the series, urban and rural grassroots leaders from across the United States share how their communities are developing and implementing strategies—grounded in local places, cultures, and histories—to shift power and achieve systemic change.

---

The culture I come from relies a lot on storytelling to cement our learning and culture. I was born in Cabo Verde (Cape Verde) and started working in public health there as a clinical psychologist. I was responsible for mental health in what was, at the time, one of the world’s poorest countries. Because many of my patients were without homes and had been brought to the police station following their involvement in some type of public disturbance, I often found myself talking to police, people in the court system, and businesspeople.

I could see those patients in my office, give them some medication, and see them again at their follow-up appointment a month later, their situation basically unchanged—or I could do something different. I began to think about how, starting with those community conversations and partnerships that developed, public health officials might work with neighborhood residents to build a system out of nothing.

 

From Cabo Verde to the United States

Fast forward to my family’s move to Portugal, where my mother was born, then to the United States, where, in 1998, I found a job with the Rhode Island Department of Health (RIDOH) as an education and outreach coordinator. There I was, talking to parents about lead poisoning, doing what we do so readily in public health: telling people what to do.

Every day, after educating them about the dangers of lead poisoning, I sent families back to homes full of lead paint, because at the time, our public health response did not include necessary environmental changes, like home repairs. Nor did it include asking people what they thought were the sources of their health problems—let alone listening to their stories. I found myself in a country with so many resources and so much expertise, experiencing the same challenges I had faced in Cabo Verde, where I had almost no resources whatsoever.

A few years later, I worked as a minority health coordinator, focusing on racial and ethnic minority populations in Rhode Island—on people like me, who come here with dreams and hopes to do better but often find themselves without the resources or opportunities they need. Along with my team, I was still telling people what to do. We provided information on how to be healthy but never challenged ourselves, as public health professionals, to create the social and environmental conditions that alleviate structural barriers to health and allow people the opportunity to act on that information.

If you don’t have decent, affordable housing, a livable income, places to safely walk and exercise, or access to affordable fruits and vegetables, what opportunities do you have to make healthy choices? Yet, we continuously tell people to be healthy in the face of structural barriers—we tell them that their health is their individual responsibility, without making the structural changes needed to enable people (and their community members) to overcome systemic barriers to health.

By the early 2010s, when we looked at the metrics produced by Healthy People, the federal government’s data-driven blueprint for public health goals, the numbers showed us that, for the first time in public health history, life expectancy for children had dropped; it was lower than when we were children. How did we have it so wrong? And how could we be so complacent about the status quo?

 

Developing a New Approach: The Health Equity Zone Concept

So, we challenged ourselves to do something different. We asked ourselves, “What else can we do if indeed we fundamentally believe that positive health outcomes—positive life outcomes—result from good jobs, good education, safe housing, healthy, affordable foods, and safe, prosperous communities? How can we develop an intentional strategy to realize such outcomes—strategies that empower communities to actively improve their quality of life?”

At the time, ideas were percolating about how to promote health outcomes in a radically different way, and related movements were building in other parts of the country and the world. Public health professionals and community developers—along with community activists—were having “aha” moments about the linkage between social determinants of health and terrible, systemic health outcomes for people of color and those living on low incomes. The passage of the Affordable Care Act in 2010 also pushed public health officials to think about these connections.

All this fed into the vision for Rhode Island’s Health Equity Zones (HEZ). Launched by the state in 2015, HEZ is an approach to prevention that leverages place-based, community-led solutions to address social determinants of health. Each of 15 designated zones is a contiguous area—ranging in geographic size from a few city blocks to an entire county. Each is designed to address public health needs in communities with higher-than-average health risks.

The populations of these zones range from 5,500 people to 178,000 in the largest HEZ, the capital city of Providence. Some zones overlap. For example, two smaller HEZs are neighborhood based and also part of the larger Providence citywide HEZ. Each HEZ has a “backbone” community organization—a trusted, local group that people can turn to and which is responsible for promoting HEZ’s approach and assessing how effective the interventions are.

Lead partner agencies vary because the needs of different HEZs vary. One HEZ lead is a community health center with multiple sites. Other lead organizations include a domestic-violence survivor support nonprofit, a city government, an affordable housing developer, and a school district.

This system requires the state government to honor and respect the expertise of those who live and lead in each community. Rhode Island’s Health Department isn’t alone in this kind of thinking and commitment. At about the same time that Rhode Island launched the HEZ initiative, Maryland began implementing its own health empowerment zones. Connecticut and Delaware have also created similar community-rooted collaboratives.

In Rhode Island, we were also inspired by a new model of public safety work being carried out in Providence. These were “safety partnerships” of residents, local community development organizations, and community-minded law enforcement staff (with financing support from the Local Initiatives Support Corporation), who were effectively collaborating to brainstorm and carry out strategies to reduce the crime rate.

Like those safety partnerships, each HEZ builds and maintains an inclusive, resident-led, community-based collaborative. Together, partners conduct a baseline assessment of the community to identify and prioritize health inequities. They create an action plan to address the disparities’ root causes. Then, HEZ members evaluate the outcomes of the interventions.

At the heart of the HEZ structure lies a commitment to listening to residents’ stories. From conversations with residents, HEZ leaders, many of whom are community residents themselves, learned that new mothers needed breast-feeding support, that diabetes and healthy eating were top of mind for others, that people wanted more job opportunities close to home, and that many were seeking support for trauma and mental health concerns.

A common issue among older residents was the difficulty of getting out of their homes and a resultant lack of social connection, especially in winter. In response, HEZ backbone organizations created community-service programs where teens help elderly neighbors on snowy days by shoveling out their walks and drives. It was a simple solution, but practical, conceived of and carried out by neighbors themselves.

In the Central Falls/Pawtucket HEZ, nearly a third of residents live in poverty, and one in three are recent immigrants. The area suffers high rates of teen pregnancy, early-childhood obesity, and infant mortality. On an early “listening tour” of the area, conversations didn’t focus specifically on health—people talked about their worries about income and jobs, lack of access to healthy foods, and the need for better transportation. To tackle food insecurity in various HEZs, collaborators have launched farmer’s and local neighborhood markets, community gardens, healthy cooking/nutrition classes, food pantries, meals for residents in need, diabetes and healthy eating programs, and special programs, like a women of color breastfeeding support group.

Some HEZs have also adopted strategies that target the physical environment, promoting bike lanes, improving vacant properties, and planting trees and green space. Others focus on behavioral health, disease prevention, and education. Still others are promoting access to nutritious food, transportation, health services, and job training.

 

Preliminary Signs of Success

We have data on Rhode Island’s HEZ up to the beginning of the COVID-19 pandemic in 2020. Five years is not a long time, but early data shows encouraging outcomes. In Pawtucket, addressing lead paint and unsafe housing conditions reduced childhood lead poisoning by 44 percent. And after instituting a range of food initiatives, there was a 40 percent increase in redemption of SNAP (Supplemental Nutrition Assistance Program or “food stamps”) at farmers’ markets in the West Warwick HEZ and a 36 percent increase in access to fruits and vegetables in the Central Providence HEZ.

Meanwhile, in the West Elmwood HEZ, improving educational outcomes for parents and young children has been a prime goal. The HEZ teamed up with a local community development corporation’s initiative to support parents with young children to earn postsecondary credentials and secure career-track employment while preparing their children for successful futures. Fifty-one families and 64 children have participated in the program, with 15 parents receiving secondary credentials. All told, families have received 95 coaching sessions.

There are statewide outcomes, too: healthcare access data, for instance, show a 30.3 percent decrease in the number of adults not seeking medical care between 2015 through 2020.

Still, it can be hard to tease out a direct correlation between intervention and impact when it comes to the social determinants of health. Moreover, success measurement metrics vary depending on the goals of each local initiative, many of which have not yet matured enough to show quantifiable impact. And then, of course, COVID-19 came along and exacerbated longstanding inequities.

COVID-19 also showed us just how vital the HEZ infrastructure was for many of our most vulnerable Rhode Islanders. HEZ networks helped speed the distribution of protective equipment, testing, vaccines, and emergency food and financial support, among other resources. Indeed, HEZ outreach efforts seem to have contributed to more equitable COVID-19 vaccination rates in Rhode Island. While national data demonstrated notable racial disparities among people who received at least one dose of COVID-19 vaccine (64 percent of whites had received a first vaccine and 59 percent of Black Americans, as of July 2022), a more equitable distribution was evident in COVID-19 vaccination rates in Rhode Island, with only a one percentage point difference in first dose of COVID-19 vaccination rates between Black and white Rhode Islanders (presently 76 percent white, 78 percent Black).

According to the vaccination clinic operations team for Rhode Island’s COVID-19 response, the mobilization of HEZ collaboratives was integral to getting vaccines to as many people in disproportionately burdened communities as they did.

 

A Three Legged-Stool: Voice, Choice, and Equity

Three words recur in the stories I share about this work, because I see how they guide communities’ visions for health equity zones: voice, choice, and equity.

Voice, because government has an obligation to listen to residents. Every individual, family, and community has its own story, lived experiences, resources, and strengths. Public officials do not know best.

A new participatory budgeting effort, which is engaging two of our HEZs to determine priorities for nearly $1 million in federal funds for work to improve health outcomes, is yet another example of how we can help ensure residents exercise voice and agency in how government dollars are spent. When we truly listen to that voice, we can nurture choice, building systems that afford people and communities the opportunity to do better, the choice to be healthier. And if we listen, if we respond to the voices and fix broken systems, then we can achieve equity.

These are the kinds of actions that will help ensure that every person has a chance to live their highest potential—regardless of race, class, sex, gender, disability status, or ZIP code.

Bottom line: the NEZ initiative is not just a program. It is infrastructure, and it is a movement that challenges people to prioritize equity, sit together, and change public health for the better.