To Protect Democracy, We Must Protect Public Health Data

Public health data is disappearing. We can protect it and make the 2030 Census a success.

Preserving public health data is vital to our democracy. Data tell the story of who we are as a nation. It can inform policies that meet community needs, determine how government spends money, and make it possible to hold elected leaders accountable for protecting our wellbeing. 

For people to count, they must be counted. That’s why  the Census and Data Equity team at The Leadership Conference Education Fund advocates for data collection that accurately reflects all communities—and why I find it chilling that we are witnessing the deletion and alteration of websites with crucial health data by the current administration. 

Those of us who want to advance health equity and protect our democracy can combat these efforts by spreading the word about the harm hiding and distorting data causes, and by working to make the next census a success. 

Removing and distorting data

Since January 2025, federal agencies have deleted public health and other data to comply with controversial Executive Orders on gender and diversity, equity, and inclusion. For instance, the Centers for Disease Control and Prevention removed its Pregnancy Risk Assessment Monitoring System, a critical tool to address the Black maternal health crisis. The agency has restored it—for now—only because of a court order. Other data sets are still missing. 

When government removes data, it’s harder for the healthcare system to recognize and respond to emerging problems. Inequities in health, wealth, and opportunity become invisible. Voices go silent. False narratives thrive. Public trust erodes. Those who have long faced structural racism and other forms of bias become more vulnerable. It becomes much more difficult to hold leaders accountable—all of which undermines democracy. 

In addition to removing data, the Trump administration is undermining data collection by omitting categories like transgender, and subcategories like whether someone who identifies as Asian American has Chinese or Indian heritage. For example: 

• Government agencies omitted questions about sexual orientation and gender identity from the National Crime Victimization Survey. Those questions were reinstated because the law requires it. But the administration has repeatedly erased any data collection it deems problematic, bringing it back only when the law requires it and only in a cursory, narrow way. 
  
  
• Last year, we were among those who pushed to improve disability data collection, which has failed to capture the range of disabilities people live with. This thwarts efforts to make our society more accessible and inclusive. Now, efforts to improve federal disability data collection have stalled altogether. Instead the Secretary of Health and Human Services called for an autism registry. The implications are horrifying and are understandably fueling anger, fear, and distrust. 

Data collection in our country is a tangled web involving multiple sectors. The federal government, states, and some localities collect data, as do hospitals, private health systems, drug makers, and others. And the recent federal actions have disrupted the path to better coordination and progress, which puts us all at risk. 

The 2030 Census

Efforts to weaken our data infrastructure also threaten the 2030 Census. The decennial census drives money, power, and respect by determining how political districts are drawn, where federal dollars go, and whether communities are visible.  However, declining trust in the federal government may make it harder to gather critical data that reveal the challenges communities face. If immigrants, people of color, people with disabilities, trans people, and others fear the government will weaponize data, they may not provide it. 

To make matters worse, the Commerce department recently terminated three census advisory committees that were working to build trust and help make the 2030 Census fair and accurate. 

With heightened fears as the Department of Government Efficiency (DOGE) accesses IRS and health data, we need to both ensure safeguards against misuse of data hold and reassure the public that census data will not be weaponized. 

The imperative to take action now

Protecting our democracy requires protecting both public health data and Census Bureau surveys. 

That starts by acknowledging that robust, disaggregated data sets—data presented by specific subgroups—provide a more accurate representation of the health and wellbeing of communities. They make it possible to design, implement, and evaluate programs that improve health and the social determinants of health, such as access to clean water, safe housing, and more. 

For example, Mount Sinai Hospital recently announced a partnership with the nonprofit, Real Dads Network, to bring free heart screenings to Black men in New York City. This initiative is based on data showing Black men in the city have disproportionately high rates of undiagnosed, life-threatening heart disease. Targeted interventions like this are only possible when the kind of data that can save lives and strengthen communities is available.

Helping diverse advocates and communities shape a national conversation will create pressure for guardrails against misuse of data. I’m grateful RWJF is engaged in helping people think about what it means to have data equity, and deeply understands the value of data in improving public health. Other sectors can also support this work: 

• Community-based organizations and advocates can visit the Leadership Conference Education Fund’s Roadmap to the 2030 Census for advocacy tools and get-out-the-count resources and join our Data Disaggregation Action Network and visit our We are the Data page, where we share examples of how disaggregation advances health equity. 
  
  
• Philanthropy can invest in nonprofits, faith-based organizations, and others to help build trust and participation among communities at risk of being undercounted.
  
  
• The Census Bureau should lead a hyper-local, tailored effort that encourages people to participate in the American Community Survey and the decennial census, so we count every community. Now is the time to lay the groundwork for that. 
  
  
• Educators, advocates, and the business and financial communities can learn more and help build awareness about the role that public data play in ensuring that all our communities are resilient and thriving, and have access to necessary resources. 
   

This is a critical moment. Society will be healthier and our democracy stronger if more voices extoll the virtues of these data and help rebuild public trust. I’d like to see advocates working for social change pressing for better data. I’d like more people to advocate for better state and local, as well as federal, data because now more than ever, we need redundancies in data collection. Data determine representation not just in our democracy but in our society as a whole. When data are thorough and accurate, communities are visible, and policymakers can tailor policies and practices to support their health and wellbeing.

About the Author

Meeta Anand is Senior Director for Census and Data Equity at The Leadership Conference on Civil and Human Rights and The Leadership Conference Education Fund. She holds a J.D. from Harvard Law School and a master’s degree from The Fletcher School at Tufts University.