Disappearing Federal Data: Health Disparities Implications
Summary of federal Data changes & Removals (as of July 28, 2025 - based on provided text)
This text details concerning trends in the availability of federal data, specifically regarding key demographic details and health-related statistics. Here’s a breakdown of the changes and removals,categorized for clarity:
1. substance Use & Heart Disease data:
* NSDUH (National survey on Drug Use and Health): Racial and ethnic data were omitted from the 2024 annual report, despite being included in previous years.
* CDC Heart Disease Data: Data related to substance use among youth and heart disease death rates were impacted by broader data changes.
2. Workforce Data:
* OPM (Office of Personnel Management) Workforce Report: The “diversity module” (race/ethnicity breakdown) was removed. The quarterly workforce data hasn’t been updated since September 2024.
3.SOGI (Sexual Orientation and Gender Identity) Data:
* CDC Data (Heart Disease & BRFSS): Datasets were briefly taken down and republished after renaming the ”gender” variable to “sex.” Questions about gender identity,sex at birth,and transgender status were removed from recent BRFSS data.
* Medicare current Beneficiary Survey: Collection of gender identity data was stopped (had begun in 2023).
* HRSA Uniform Data System (UDS): SOGI data elements were removed going back to 2016 (when SOGI questions were first included). This impacts data from community health centers, which serve marginalized communities.
4. Broader Concerns & Future Uncertainty:
* Staffing & Resources: The overall availability of federal data is threatened by staffing cuts and other changes.
* PRAMS (Pregnancy Risk Assessment Monitoring System): The future of this crucial dataset for maternal and infant health is uncertain due to HHS staff cuts impacting the overseeing team.
* Labor Statistics: Recent actions (firing of the Labor Statistics head) suggest further potential disruption to data collection and reporting.
the text paints a picture of a systematic reduction in the collection and availability of data related to diversity, equity, and key health indicators. This raises serious concerns about the ability to accurately monitor and address disparities in health and other areas.