Transforming Public Health Data Systems
Updated Sept. 2026
In the wake of the pandemic, the RWJF Data Commission released recommendations to build a robust 21st century public health data system and advance health equity. Five years later, these recommendations are more relevant than ever.
We mark five years since the National Commission to Transform Public Health Data Systems was created and released its recommendations, which still resonate today. Communities should shape public health decisions, data should be timely and detailed, and systems should reflect everyone’s experiences.
A healthy democracy depends on people having reliable facts to make decisions and hold leaders accountable. Five years ago, we couldn’t have foreseen today’s challenges: data disappearing from federal websites, scientific research being cut or halted, and politics shaping health guidance. Without reliable data, it’s harder to know what’s true, speak up, and push for change. Strong data supports public health and strengthens democracy.
Data justice protects more than facts; it protects people’s dignity, rights, and futures. The solutions are within reach, and evidence can help us get there.
National Commission to Transform Public Health Data Systems
The COVID-19 pandemic exposed major gaps in our public health data systems, particularly for communities of color that suffered disproportionate harm. RWJF created the National Commission to Transform Public Health Data Systems to develop a lasting strategy to strengthen and modernize public health data.
The Commission worked to find better ways to gather and use data to improve health in all communities. They focused on new ways to collect and use data, making sure it reflects different communities, helping communities with fewer resources, and involving locals in shaping decisions about data. Their recommendations emphasize equity, transparency, and stronger collaboration between federal, state, and local data systems.
Now, as new threats to public health data emerge, RWJF is helping to protect that data, support researchers, and help communities turn information into better health.
Advancing a More Equitable National Public Health Data System
Inspired by the Commission’s recommendations, RWJF is supporting a range of projects that protect existing data and strengthen our public health data systems to better serve everyone, especially those often left out.
Grantee highlights include:
- In a series for Stanford Social Innovation Review, Modernize Anti-racist Data Ecosystems (MADE) for Health Justice shows how data equity and data justice can improve lives and create lasting change.
- Population Health Information and Visual Exchange (PopHIVE) is sharing real-time, de-identified hospital data to help researchers and policymakers understand emerging health trends.
- Georgetown University’s Massive Data Institute, in collaboration with AAPI Data, released a practical guide to putting safety first, protecting data, restoring community trust, and helping governments and non-profits build data systems that center and serve communities.
- The Leadership Conference Education Fund’s Census Counts updated its Roadmap to 2030 Resource Guide, a tool that translates complex Census Bureau planning into clear milestones and concrete actions organizations can take to prepare for a fair and accurate 2030 Census.
- The Data Foundation launched the Evidence Act Hub, an online home for key federal data and evaluation plans, reports, and tools required under the Evidence Act.
- Regional collaboratives and groups like the Big Cities Health Coalition are bringing together public health leaders at the state and local level, working with community organizations to protect and use local health data.
Grant Initiatives
Data shape who gets seen, who gets served, and who is excluded. That’s why since 2021, RWJF has invested in the Commission’s blueprint for a more equitable, public health data system. Here’s what that looks like on the ground, across the three recommendations and the grantees bringing them to life.
Center Health Equity & Wellbeing in Narrative Change
Grant Initiatives:
- Finding better ways to track health and wellbeing in Atlanta
- Including more community input in national health surveys
- Strengthening data systems to evaluate the health effects of incarceration
- Supporting the use of proven tools to address health-related misinformation
- Establishing a Southern regional data network to drive public health transformation
- Linking climate experts with mayors to help them respond to local health and weather trends
- Helping mayors talk with communities about how extreme weather impacts health
Ensure Public Health Measurement Addresses Structural Racism
Grant Initiatives:
- Centering Indigenous voices in data practices
- Improving how the government collects race and ethnicity info
- Linking criminal justice and health data to see bigger patterns
- Testing how social factors like housing or income help predict health outcomes
- Making AI and healthcare tools work better for everyone
- Using community-driven maps to surface health assets
- Supporting data tools in the South that focus on improving racial and health equity
- Encouraging innovative solutions to help cancer patients manage their care
- Bringing together groups to push for climate solutions in underinvested communities
- Deepening understanding of Asian American subgroup needs through public comment input
Prioritize Equitable Governance & Community Engagement
Grant Initiatives:
- Accelerating the implementation of the federal Evidence-Based Policymaking Act
- Helping health departments modernize data systems and improve health equity
- Making healthcare systems work together to help people who it most
- Measuring the impact of RWJF strategic data investments in public health
- Embedding racial equity values within shared data systems
- Supporting a data dashboard community to help grantees sustain and scale their work
- Setting transparent, community-informed standards for food-related data tools
- Placing climate-health experts in city government to help tackle local health problems from climate change
Government Updates Race and Ethnicity Data Collection Standards: Implications and Insights
The Office of Management and Budget’s newly revised race and ethnicity data collection standards now capture historically marginalized communities, who will be visible in federal data for the first time. A roundtable discussion featured in Health Equity shares insights on the expanded race and ethnicity standards and steps toward implementation.
From the Blog
Philanthropy’s Crucial Role in Protecting Public Health Data
To Protect Democracy, We Must Protect Public Health Data
Recent Content
The State of Public Health and Public Health Data
Over the past year, data and science have come under repeated attack. Commission Director Gail Christopher and RWJF’s Alonzo Plough shared their thoughts on the dramatically changing public health data landscape and the challenges and opportunities that lie ahead.
Standing Up for Evidence: How Do We Protect Science When The Stakes Are This High?
Science has been increasingly politicized, compressed into soundbites, and challenged in public discourse. AcademyHealth’s Aaron Carroll and RWJF’s Alonzo Plough explored what it takes to protect scientific independence and how the field is navigating unprecedented pressures.