Philanthropy’s Crucial Role in Protecting Public Health Data

Health depends on sound data, honest science, and strong partnership. We must commit to protecting them.

Everyone deserves the same chance to live a healthy life. Good data can help paint a full picture of every community, so that policymakers, researchers, and advocates can work together to overcome health challenges and build community assets. Above all else, good data can make sure no one is unfairly left behind.

Today, in the United States, we’re witnessing data, science, and even history pushed aside to serve political agendas. This “anti-facts” movement, as I call it, threatens the health and wellbeing of entire communities. What’s more, researchers across the country who have lost federal grants are scrambling to find alternative resources to continue their studies and pursue tomorrow’s breakthroughs. The very foundation of scientific progress faces unprecedented strain—and, ultimately, everyone will suffer.

That’s why it is critical for philanthropy to stand up for public health data. To do that, the philanthropic sector must broaden our partnerships and reimagine a path forward that protects hard-won progress while laying the groundwork for future gains.

Finding new partners, funding innovation

At the Robert Wood Johnson Foundation, we’re taking a dual approach by teaming up with partners at every level—from local to national—to safeguard critical health data and with the researchers behind those data. In a time of funding cuts and rising skepticism, this is about keeping science open, trustworthy, and independent.

When the administration began purging data from dozens of federal government websites, many researchers and nonprofit organizations moved swiftly to download,  preserve, and protect the data—including our partners at The Leadership Conference Education Fund and the Center for Open Science. These groups are preserving data covering everything from air quality to economic growth to reproductive health so that they are available for all who need them.

RWJF is also ramping up support for the 2030 U.S. Census and the American Community Survey, cornerstones of community data that help guarantee all communities have fair representation and support.

Determined to meet this urgent moment, RWJF has committed:

• $10 million in stop-gap funding for National Institutes of Health and Centers for Disease Control and Prevention (CDC) health equity grantees whose grants were eliminated by the administration.
• $20 million to preserve public health, climate, and health data.
• $10 million to support local, data-driven studies on health gaps.

Designing data systems for the future

Building better data systems requires innovation. In public health, most data reporting occurs within a one-way, centralized structure. States and localities collect and submit data to the CDC, which then analyzes and publishes the data. However the administration has undermined the CDC’s traditional data reporting, which is a deeply distressing and damaging move.

Given recent events, including executive orders, significant policy shifts, and data purges, we need to rethink how to protect essential data that supports the nation’s health. This includes an expanded role for state and local health departments to counter non-scientific vaccine standards and biased federal-level health data.

RWJF’s goal is to work with a range of local governmental and community partners to produce reliable data that inform actionable solutions while protecting privacy so that people feel confident in using data for advocacy and decision-making. We are partnering with data science and community innovators to make that happen by:

• Supporting local communities that are owning and creating their own data, like our partners in the Modernized Anti-racist Data Ecosystems (MADE) program, who are infusing principles of equity and justice into data. 
• Joining forces with the Big Cities Health Coalition, a network of leaders from 35 large-city health departments, who are working closely with community groups to safeguard health data and ensure people can have confidence in data shaping local decisions.
• Teaming up with the Northeast Public Health Collaborative—nine states in the Northeast—to support how their public health departments share data, combine resources, and work together. Doing so seeks to help build a shared system for collecting public health data in the region. 

Creating alternative data sources

RWJF is partnering with city and regional dashboards that pull from various data sources to provide a comprehensive picture of health and performance, to gather data that federal reports will now miss. Covering more communities can portray a clearer, unbiased picture of health and wellbeing in many places across the country. For example, RWJF is supporting the National Indian Health Board’s work to build data capacity and ensure full representation for Tribal communities through meaningful, action-oriented data.

In the private sector, our work with PopHIVE (short for Population Health Information and Visualization Exchange) involves a free online platform, created alongside leading health systems, to deliver real-time, de-identified health data. This innovative project offers actionable, data-based insights to a range of users, including researchers, policymakers, and journalists.

Together with fellow funders, RWJF is working to create a common framework to shield scientific data and support the researchers behind them. As federal science programs face deep budget cuts, political pushback, and growing scrutiny, we must protect the people and data behind the research and commit to keeping data independent.

Standing up for science

The challenges are real, but I’m confident philanthropy will rise to meet the moment. While we cannot replace the billions of dollars in lost federal funding or stop the rising tide of misinformation, philanthropy can help protect data integrity, support policies to keep data reliable, and help the public understand why strong data matters. This is a long road, and it requires all of us walking it together.

When people ask how I manage to stay hopeful in tough times, I tell them it’s because hope opens doors that negativity closes. It’s the only way to keep moving ahead.

Recently, I had a conversation with someone who was giving me a ride to a meeting in Washington, D.C. He immigrated to this country from Ethiopia and was upset about the administration’s attacks on science because he recognized the role it plays in his wellbeing.

His words gave me hope that people recognize the importance of sound, objective science to the health of our nation. We need to increase this awareness and take action. Lives are on the line.

About the Author

Alonzo Plough, chief science officer and vice president, Research-Evaluation-Learning, is responsible for aligning all of the Foundation’s work with the best evidence from research and practice and incorporating program evaluations into organizational learning.