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.

Grant Initiatives  

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. The following grant initiatives are aligned with the Commission’s three overarching recommendations. Learn more about RWJF Transforming Public Health Data Systems Grantees.

Center Health Equity and Well-Being in Narrative Change

  • Developing key well-being metrics to improve health and equity in Atlanta
  • Engaging communities to advance health equity in national public health surveillance data
  • Improving data collection to better examine the health impacts of incarceration
  • Supporting the discovery of evidence-based tools that combat misinformation and disinformation in public health

 

Ensure Public Health Measurement Captures and Addresses Structural Racism and Other Inequities

  • Disaggregating the data of Indigenous people and respecting sovereignty
  • Improving federal OMB standards for collecting race and ethnicity data
  • Strengthening data integration between criminal justice and public health
  • Testing the predicting power of SDOH indices in federal health programs
  • Transforming machine learning datasets for equitable healthcare outcomes

Prioritize Equitable Governance and Community Engagement

  • Accelerating the implementation of the federal Evidence-Based Policymaking Act
  • Catalyzing health departments and partners to advance data modernization and health equity
  • Closing gaps in the healthcare of high-risk populations with new interoperability standards
  • Evaluating RWJF investments to transform public health data systems
  • Implementing Racial Equity Principles within Integrated Data Systems

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

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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