Access to open data is a pivotal component to driving research that improves the lives and health of all people. Open data are publicly available, machine-readable datasets that can be freely accessed, used, and shared by anyone. These open-access databases are cornerstone to advancing scientific progress and informing evidence-based decision and policy making—especially in the realm of public health, where challenges are often complex and require robust data to generate evidence. Making data freely accessible comes with a myriad of benefits:
- Empowers Stakeholders: Equips researchers, clinicians, and policymakers with critical information to derive deeper insights into health challenges to generate evidence-based policymaking.
- Stimulates Innovation: Catalyzes new scientific inquiry across sectors by offering robust analysis opportunities to ask new questions and uncover unidentified trends, effectively enhancing the utility of datasets beyond their original purposes.
- Transforms Data into Public Value: Stimulates collective engagement with data to understand population health and generate actionable insights to improve the health and well-being of people.
Open data provides many angles of analysis that can significantly enhance the field of public health. For example, a dataset could identify gaps in care, highlight the impact of risk factors, examine patterns of comorbidities, and evaluate the effectiveness of interventions. Many datasets—such as the Youth Risk Behavior Surveillance System (YRBSS) and the Medicare Current Beneficiary Survey (MCBS) Public Use File—offer robust information to understand key facets of population health like health behaviors, healthcare utilization, and outcomes.
Despite bipartisan support over the years, open data has been under threat due to executive orders released under the current Trump Administration. In early February 2025, reportedly over 8,000 web pages—including those with open access data—were taken down across various government websites, especially among HHS-related agency sites. Commonly targeted topics were those that referenced or included gender ideology, reproductive health, vaccines, DEI-related terms, and environmental justice, highlighting the partisan nature of their removal. These criteria affected many critical datasets that provided immense information on overall health—for example, the YRBSS, which monitors adolescent health behaviors over time, was impacted due to its demographic data about sexual orientation and gender ideology. While some of these sites have since been reinstated with some information scrubbed, the quiet removal of these sites and data sets at all represent the dangers of removing open data and the rippling consequences across the public health research and practice community.
When researchers do not have access to open data or datasets are altered, the work they do that is vital to understanding how to improve population health is stalled or unable to be completed. The removal of datasets disrupted many fields of research, including the following relating to public health:
- AtlasPlus, which has over 20 years of CDC surveillance data on HIV, viral hepatitis, and STDs was removed, but has since been reinstated. HIV researchers were adversely impacted as their datasets often include references to gender ideology and LGBTQ+ populations.
- The Agency for Toxic Substances and Disease Registry (ATSDR) data
used by researchers to help protect people from the health effects of chemical exposures remains offline.
- The CDC’s Social Vulnerability Index, a valuable place-based dataset essential to public health equity research that maps and quantifies social factors that influence community vulnerability was removed but reinstated due to a court order.
Removing federal open data poses a significant threat to innovation and informed policy-making that affects public health advancements and the health and wellbeing of all people. Now more than ever, it is imperative that policymakers unite around a common goal of protecting and restoring data. The politicized removal of open data creates a dangerous precedent that inhibits accountability. Policymakers should recall the bipartisan support for open data initiatives in the past given its ability to advance progress, create jobs, and demonstrate transparency to taxpayers on how the government is a steward of their money. This is not a partisan issue—it is a shared responsibility to ensure data collected with taxpayer dollars can continue to be used to fuel innovation, shape policies and practices, and ultimately contribute to a healthier, more informed society.