Transforming Public Health Data Systems

Robert Wood Johnson Foundation (RWJF) Commission released recommendations to build a robust 21st century public health data system to advance health equity.

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The COVID-19 pandemic highlighted many gaps in public health data gathering concerning race and ethnicity. How can data better illuminate the ways in which structural racism and other forms of discrimination drive health inequities?

National Commission to Transform Public Health Data Systems

RWJF established a first-of-its-kind commission to reimagine how health data are collected, shared, and used, and to identify the public and private sector investments needed to modernize our health data infrastructure and  improve health equity

Read the report

More About The Commission

Equity and overall well-being are not generally part of how we talk about health, and are not emphasized in our data collection. This has to change in order to truly move the needle on health equity and create thriving communities.

The Commission explored challenges and opportunities such as new data sources and measures that show promise for future public health surveillance; data disaggregation to better identify risk and outcomes by race, gender, and ethnicity; building data capacity in under-resourced communities; community involvement in shaping data systems; data interoperability and other important areas. 

RWJF challenged this commission to identify the improvements needed to make sure our data  systems reflect the harms that racism and other forms of discrimination have on our communities.

The Commission, which included some of the nation’s leading experts in areas such as healthcare, community advocacy, government, business, public health, and others, released their recommendations October 2021.

On the Frontlines: Efforts to Advance a More Equitable National Public Health Data System 

Inspired by the Commission’s recommendations, RWJF is helping to support a range of projects designed to accelerate progress in data systems and modernize public health data infrastructure across the country.

#EquityandData

Follow the conversation on social with #EquityandData

Grantee highlights include:

  • Modernized Anti-Racist Data Ecosystems (MADE) for Health Justice is a new grant opportunity, administered by the de Beaumont Foundation, that seeks to accelerate the development of health-focused local data ecosystems that center principles of anti-racism, equity, justice, and community power. Up to five non-profit organizations will be funded to build and facilitate multisector teams tasked with creating local data ecosystems. The application deadline is August 31, 2022. Learn more at www.madeforhealthjustice.org.
  • The CDC Foundation awarded $125,000 to five local data equity coalitions to use PLACES health data to design innovative solutions that address the social and structural factors that influence local community health outcomes.
  • Actionable Intelligence for Social Policy (AISP) at the University of Pennsylvania selected its first cohort of community site teams to participate in their Equity in Practice Learning Community to center racial equity in data integration.
  • The Public Health National Center for Innovations (PHNCI) is convening its 21st century learning community, a group of 18 states working on statewide public health transformation. PHNCI will engage a subset of states in examining and implementing the Commission's recommendations.
  • The Gulf Research Program of the National Academies of Sciences, Engineering, and Medicine awarded planning grant awards of $100,000 to two historically black universities to investigate how social determinants of health data can transform public health data systems to better address health disparities faced by communities in the Gulf of Mexico region. Learn more about the funding opportunity.

Grant Initiatives Organized by overarching Commission Recommendations

RWJF is committed to the Commission’s recommendations for a modernized public health data infrastructure where data are collected, analyzed, and interpreted with an eye toward equity. The foundation has committed an initial $50 million in funding toward that goal.

Learn more about RWJF Transforming Public Health Data Systems grantees.

 

Featured Initiatives

Advancing state and local policy change to promote data disaggregation

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Supporting HBCUs to enhance data capacity and address climate and health concerns in the Gulf South

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Transforming local data infrastructure to advance health equity

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Editor's Pick

Big Data: How Data and Tech Can Inform Equity-Centered Public Health Data

A new supplement featured in Big Data spotlights recommendations from the National Commission to Transform Public Health Data Systems and explores the many ways the data and tech industry can partner with the public health field to improve data collection, analysis, stewardship, and use with equity at the core.

Read more

Recent Content

A Need For Disability Data Justice

“A disability data justice approach is urgently needed. Public health data systems and infrastructure must be built to collect disability data and use this information to combat ableism and support equity and social justice,” writes Bonnie Swenor, member of RWJF’s Expert Panel for the National Commission to Transform Public Health Data Systems.

Read the Health Affairs blog post

Equity-Centered Public Health Data Demands New Voices At The Table

“We need to do more than just talk about the social determinants of health—we need to operationalize them within a justice-focused data framework,” write Commission Director Gail Christopher and Alonzo Plough, RWJF vice president, Research-Evaluation-Learning and chief science officer.

Read the Health Affairs blog post

Pandemic Tracking and The Future of Data

This episode of the popular podcast 99 Percent Invisible examines what it will take for more equitable data collection efforts.

Listen to the podcast

Related Content

The Voices We Trust: Building Equity-Centered Community Data Ecosystems That Work Everyone

Drawing from the insights of nearly 500 people representing communities across the United States, this report shares findings and actionable recommendations for creating equitable community data ecosystems. 

Read the report

Shortsighted COVID policies are accelerating harm for people with disabilities

“We need good, timely public health data to create a true public health narrative that advances equity and centers power in the community—in this case, the disability community,” writes Commissioner Javier Robles, National Commission to Transform Public Health Data Systems.

Read the op-ed in The Hill

Reimagining Our Public Health Data System with a Focus on Equity

In a second webinar, experts walked through the Commission recommendations and actionable solutions to reimagine and transform our public health data system.

Listen to the webinar recording

Centering Equity in Data—Transforming Our Public Health Data Systems

In the fall of 2021, participants joined RWJF for an interactive discussion of the Commission report, discussing recommendations and hearing insights from experts about how and why we must prioritize equity in data.

Listen to the webinar recording

New Commission To Tackle How National Health Data Are Collected, Shared, And Used

“Our hope is that these recommendations serve as a catalyst for meaningful change before the next public health crisis hits. It’s impossible for the nation to fix what isn’t measured,” said Alonzo Plough, RWJF vice president, Research-Evaluation-Learning and chief science officer.

Read the Health Affairs blog post
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