Many of the data points in the Chicago Heath Atlas for West Lawn spoke to the lived experience of Lucy Flores, Director of Community Engagement for Esperanza Health Centers. Lucy has dedicated the past 20 years to developing and increasing access to resources in Chicago communities on the south and west side. Yet, the Chicago Health Atlas was her first opportunity to access, share, and apply this breadth and depth of data to her work.
Esperanza Health Centers is a federally qualified health center serving the southwest communities of Chicago which includes Brighton Park, Little Village, Pilsen, Chicago Lawn, and West Lawn. These are under-resourced areas that suffer from disinvestment and have many families living under the federal poverty level. When Lucy was selected by Esperanza to serve as a Healthy Chicago Equity Zone lead in partnership with the Chicago Department of Public Health, many of the community characteristics were familiar to her.
“There is an assumption that the community knows and understands this data when, in reality it is couched in academic, scientific or inaccessible language,” she said. “C-Suite executives and senior leaders may have access to it and yet there is a big question as to ‘what would happen’ if the community could put that data to work.”
Prioritizing Equity and Creating a Nexus for Collective Action
“If we are to honor our values of being an anti-racist institution, of being an institution that is thinking about the structural determinants of health as well as the sort of downstream health outcomes, then part of our charge is to make sure that we can use data to share power for collective action and for collective purpose,” said Megan Cunningham, Managing Deputy Commissioner for the Chicago Department of Public Health (CDPH).
In her role, Megan led the City’s community health needs assessment and health improvement plan, known as Healthy Chicago 2025. The plan has a stated goal of closing Chicago’s racial life expectancy gap. At the time of the analysis, there was more than 10 years difference between black and white Chicagoans, and there have been significant declines in the Latinx life expectancy over the course of the last 10 years as well.
What was most significant about this plan was that CDPH focused on how to change the conditions of communities to produce health holistically. The CDPH team looked at priority areas from housing to public safety to community development to food access, environmental justice and more with the goal of rallying partners towards a common goal of closing that gap, reversing declines and creating better opportunities for wellness for all.
The plan is rooted in the idea that it is critical to build power and capacity within communities. The first step is to respect and reflect the power and capacity that already exists in neighborhoods that have been systematically disenfranchised and under-resourced historically. This approach was the impetus for creating Healthy Chicago Equity Zones.
During COVID it became evident that “no matter how right we got the science and how successful we were in developing public health guidelines at the city level, our ability to curb a pandemic rested on whether we could successfully mobilize at the neighborhood level to get people access to testing and to get vaccinated,” said Nik Prachand, Senior Epidemiologist with the department. “It really was more about whether we could get people to trust that this virus was something they should accept and that addressing it should be a priority when local challenges like food and economic insecurity had not diminished, and in many cases were much worse.”
Megan said the city really had to take a humble role. “We don’t know these neighborhoods as intimately as the people who live within them. Community members themselves understand the issues on the ground, and they have the solutions. What they need are access to the resources to really solve these problems in a way that is tailored to the needs of their neighbors and can be sustained.”
The Healthy Chicago Equity Zones drew from that learning, and has now institutionalized it as part of our public health approach in the City of Chicago. There are six equity zones regions, and each is led by a community-based organization. This “backbone” entity is meant to support then a network of community-led organizations at a hyperlocal level championing processes to do local health needs assessments and create local action plans.
Based on the local priorities these regions identify – whether that be an opioid overdose response or a public safety response or an environmental justice movement – the goal is to really arm them with the data that they need to be able to lead on those solutions in addition to flexible funding and people power to help put those solutions into action.
Helping Lucy Help Her Neighbors
For Lucy in West Lawn, the life expectancy gap is five years when compared to the Lake View community on the North side of the city. There is no one variable that can close this gap. So while Esperanza serves that “backbone” entity for West and Southwest Equity Zones, she was also able to identify areas where she could take action and have an impact. Empowered by having better access to better data about social determinants of health, Lucy explored more than just health outcomes.
“What is someone working at a community health center doing with Pre-K enrollment data?” you might ask. if we agree, academic achievement is a predictor for future success and lifelong health outcomes, it is a question we should all be asking. Lucy analyzed enrollment data for the area for college, high school and Pre-K. She found that just 5 minutes from where she lives in the West Lawn community area, the Pre-K enrollment is only 8% whereas the city-wide average is 63%. That is a staggering gap – and Lucy knew she could help.
Putting this data into action, Lucy worked in collaboration with the medical director of pediatrics at Esperanza to identify tangible action they could take to address this gap. They worked with Chicago Public Schools (CPS) to create a marketing and communications campaign to specifically target families in the West Lawn community by ZIP code in order to make them aware of the Pre-K resources both CPS and other daycare providers had available. She was also able to look at the demographics of the community and see that there were many inter-generational families living in the community, which is common in many Latino families, and that many caregivers during COVID were in-home providers.
“There are so many ways to reach people, provide education and connect them to resources by taking action at many points of entry – the health center, education system, door knocking, and canvassing to name a few,” she said. “And imagine, this is just one health indicator.”
Building a Foundation for Change in Partnership with Communities
Dr. Allison Arwady, Chicago Department of Public Health Commissioner often emphasizes that “the community is public health’s patient.”
With that focus in mind, the Department identified several new fundamental principles to help make that phrase a reality and strengthen the framework for supporting community members like Lucy and vital community-based organizations like Esperanza Health Center.
The first principle is that there must be a basis of shared data for CDPH to be in league with other partners across sectors and with community members doing critically important public health transformation work. Creating places and platforms like the Chicago Health Atlas fuels a better approach to engaging community members in shared missions and shared goals. By working together to make it possible for people to view and share the same information that CDPH epidemiologists have, in an accessible way, allows community members to analyze and use it for their own purposes. It also empowers them to use it to take data-driven actions and plan interventions grounded in facts and figures that complement their lived experiences.
Data-sharing itself helps to build shared trust. “So often during the time of COVID where there was proliferation of misinformation about what COVID meant, how people should address it, and the benefit of being vaccinated. There has been an effective erosion of trust,” said Megan. “Creating, sharing and being transparent about data provides an essential connection for education, discussion and capacity-building.”
An ongoing, open dialogue with communities allowing them to raise questions about methodology, and data sources including the integrity of those sources supports trust. The ability for community members to ground truth and pressure-test messages being delivered to them and to see that they are real in these platforms and systems is a priority. They can then come back to share with how that can be measured against lived experiences. This is a critical, never-ending process as new people get engaged and priorities change. The community can then reflect and measure the department by how well and how truthfully their experience and input is reflected back in these conversations.
“Ultimately and perhaps most fundamentally, we view that democratizing data is a way to share power,” Megan added.
Bringing Epidemiology to Communities for Action
Nik Prachard, Senior Epidemiologist at the Chicago Department of Public Health, realized within the first 12 hours that approaching COVID-19 like any other outbreak was not going to work and it would take a whole department-wide response. The entire epi-ecosystem had to be activated. Community health epidemiologists joined health protection epidemiologists just to be able to keep up and manage the overwhelming burden of information and data that was being requested.
“Most importantly, it gave us an opportunity to show how the priorities and viewpoints of the different sides of epidemiology converged to produce a better result,” Nik explained.
Their work led to the creation of the Chicago COVID Vulnerability Index (CCVI) which is essentially a composite index of components that come from the community health side of the equation like neighborhood and population characteristics as well as vulnerability. Those were merged with pandemic metrics like how many people were being hospitalized, and how many people were dying. Combining efforts was so valuable that the CCVI was not only used for disease response but also for the recovery response in terms of apportioning vaccines and prioritizing communities for economic assistance and COVID recovery funds.
All of the data components of the CCVI are readily available in the Chicago Health Atlas. “The Atlas provides a great place, not just for an index like this, but also other composite indices that make complex social analysis more digestible and actionable for community members,” says Nik.
For the epidemiology team at the City of Chicago, it was real-time collaboration that will have a lasting impact on the way they work. Disease-focused epidemiologists now have access to understand the communities in which diseases occur and understand some of the outcomes that diseases might lead to beyond just pathological outcomes. Social epidemiologists can see how making improvements to or thinking about the built environment might have for things like HIV transmission or future pandemic control.
Fundamentally, sharing this data with the community on the Health Atlas and being timely and transparent builds trust so when we next face a public health crisis, we can more effectively align our efforts and identify opportunities to have a more immediate impact.
Sustaining Efforts to Address Structural Racism and Persistent Poverty
We cannot dismantle structural racism and fight persistent poverty if we do not partner with the people in the communities most impacted. Local networks, systems and ideas currently exist but languish from a lack of investment and a specific call to partner and share in the process.
The University of Illinois at Chicago School of Public Health plays a critical role in building this community capacity. “Bringing the data together in an easy-to-use interface like the Health Atlas was the first step,” said Wayne Giles, Dean at the UIC School of Public Health. “Our sustaining role is to empower more community members like Lucy to move from data access to community action to address racial disparities in health outcomes.”
The UIC School of Public Health, its Population Health Analytics, Metrics and Evaluation (PHAME) Center and the Collaboratory for Health Justice serve as a trusted data intermediary, providing access and technical assistance to local community-based organizations that lead work in partnership with academia and government to build policy, programs, and practices to respond to the impact of COVID-19 at the neighborhood level and address issues of health equity.
“In addition to providing leadership and expertise on infectious disease and epidemiology, we are responsible for building the capacity of community-based organizations and community members who are interested in being data ambassadors and citizen scientists,” noted Dean Giles.
Both Dean Giles and Megan Cunningham believe that building these community-led ecosystems will enhance the data that can be offered in the Chicago Health Atlas over time and help integrate health in all policies.
“There are opportunities to include equity in more decision-making,” said Megan. “It is hard to get to scale, however, when we look at all the policies set by City government, and the programmatic investments being made in concert with community, you can see that a thoughtful resource for sharing data plus empowering as many people as possible to nurture the resource and use it has a multiplying effect.”
Continuing to Support Lucy and Promoting Data-Driven Community Action
Lucy’s story is just one of many that demonstrate how data can be turned into action. She has used data from the Chicago Health Atlas to create programs that address the education gap, to educate new clinicians serving Esperanza’s communities and to help increase community awareness and bolster their advocacy with data.
Lucy is a trusted resource in the community, and she is a creating a legacy of data-sharing and community engagement by sharing what she knows.
She is helping leaders like Megan, Nik and Wayne understand what is missing in the data or where lived experience isn’t reflected in the numbers or tells a more nuanced story. This feedback loop, across community areas across the city, will strengthen and sustain efforts to tackle health disparities and combat racism today and beyond.