In Pittsburgh’s Larimer neighborhood, residents partnered with local organizations to examine city data on planned traffic-calming measures. They found that despite a clear and urgent need to protect people from high-speed traffic in their neighborhood, Larimer wasn’t on the city’s priority list. Refusing to be overlooked, residents successfully advocated for inclusion, ensuring that traffic safety efforts reached their busiest streets.
While the Larimer community’s advocacy and their demands for data to improve their neighborhood were ultimately successful, what more could have been achieved — and how many more people could have been protected by traffic safety efforts — if the city’s data had included Larimer from the start?
Advancing community health requires us to fundamentally reimagine the systems we use to generate and use civic data — a diverse range of data that capture the realities of life and well-being in communities. This includes population surveys like the U.S. Census, administrative data like public transit usage, and community data such as stories, art, and oral histories. Civic data are used by elected officials, agency leaders, advocacy organizations, and community members to inform critical decisions and policies that affect people individually and collectively.
To use and create civic data in ways that drive more just policies, governance, and resource investments, it must accurately represent the communities it reflects — especially those who have been marginalized and oppressed. This means changing how data are generated and governed, and redefining who interprets and applies it.
The Modernized Anti-racist Data Ecosystems (MADE) for Health Justice initiative is working with communities to do exactly that: change how decisions are made about data and shift who has the power to influence how data are created and used. With support from the Robert Wood Johnson Foundation and the de Beaumont Foundation, MADE for Health Justice is partnering with community members, local governments, community power-building organizations, and advocates to create community-led local data ecosystems. These ecosystems involve interconnected relationships among people, processes, organizations, and data sources grounded in principles of anti-racism, equity, justice, and community power.
By centering the needs and voices of communities who have been oppressed by structural racism, MADE for Health Justice will ultimately generate better data that improve community health, driving more equitable and just decision-making.
As the initiative approaches its third year, the four MADE Communities — located in Baltimore City, Maryland; Pittsburgh, Pennsylvania; Portland, Oregon; and Tucson, Arizona — are building on lessons learned and wrestling with new challenges. They are exploring ways to align their communities’ values with the technological needs of their data ecosystems and piloting methods of centering community governance in operating them.
Aligning Community Values with Technology Needs
A MADE for Health Justice local data ecosystem is values-driven. A community’s guiding principles, priorities, and foundational beliefs — as defined by its residents — shape how a data ecosystem is developed and used, including the technology required to store and protect community members’ data.
Values like collective benefit, shared governance, accountability, integrity, self-determination, and anti-racism are fundamental to MADE Communities. But as they assess technology vendors and service providers to meet the technical needs of their ecosystems, MADE Communities face an industry that, in many cases, is dismissive of values connected to equity and justice.
To ensure technology products align with their values, MADE Communities are raising broader questions at the intersections of technology, equity, and governance, such as:
- Which vendors embrace place-based, community-centric efforts?
- Which software platforms prioritize plain-language privacy guidelines?
- Which technology companies are offsetting the environmental impacts of storing and maintaining data?
This intentionality also helps to illuminate ways that the technology industry should adapt to meet the needs and preferences of communities and embrace values-driven approaches to data.
Centering Community Governance and Leadership
Another central theme of the MADE initiative is community governance: a form of collective decision-making in which community members determine how resources intended to benefit everyone — like a data ecosystem — will be operated and used. MADE Communities have continuously explored ways to formalize governance processes that ensure community members can actively govern data-related decisions, including how their data are collected, interpreted, and used.
MADE Communities have created various community governing bodies — such as steering groups and oversight committees of residents and community advocates — to guide the build-out of their data ecosystems. These governing bodies affirm the values that lie at the heart of each data ecosystem and determine how data-related processes, analyses, and privacy measures will be instituted in alignment with these values.
In stark contrast to many traditional and exploitative community engagement practices that treat community members as an afterthought or use them to rubber stamp decision-making processes they cannot influence, MADE Communities have intentionally centered community members’ preferences, insights, and desires in the construction of their data ecosystems. They have deferred to community members as key governing authorities from the very start of their work.
Learning and Building Relationships Across Communities
Learning opportunities and relationships, both within and across MADE Communities, are instrumental to the MADE for Health Justice experience. The MADE National Office hosts an annual convening for MADE Communities to foster connection, share experiences and insights, and convey learnings from their efforts to build and govern local data ecosystems.
As an added benefit of being part of a cohort, MADE Communities are brainstorming and troubleshooting issues with one another — all with the shared goal of creating community-led data ecosystems. They are collectively building capacity as individual communities and as a larger cohort, while using practical expertise and lived experiences to transform traditional ideas and approaches to data governance.
While volatile political climates, funding cuts, and staff attrition can make collaborations with local government agencies challenging, gathering with like-minded peers across organizations and sectors continues to galvanize MADE Communities and bolster their shared efforts to advance data equity and data justice.
Working Toward a Transformational Future
Transforming and modernizing data systems require much more than technical know-how. It requires an explicit and intentional focus on people: dismantling structural racism, centering communities, and shifting and sharing power. Given the history of data-fueled racism and injustice, long-term commitments and resources are essential to support this transformation. It demands that institutions shift their mindsets, methodologies, and money, and invest in community-centered efforts that make equity and justice real.
The path toward a more equitable and just world will be long and complex, but better data can help us get closer. And MADE for Health Justice Communities are leading the way.
