HHS to Add Medicare, Medicaid Data to Autism Platform

The Department of Health and Human Services (HHS) is launching an initiative to enhance autism and chronic conditions understanding using data integration.

The initiative centralizes vast amounts of personal medical and behavioral data, raising concerns about its potential exploitation and security.

Medicare and Medicaid claims data, which includes detailed patient information, forms the backbone of HHS’s new research platform.

Claims data, covering a broad population, provides a comprehensive snapshot of a person’s healthcare journey, raising privacy concerns.

The platform will integrate EHRs, real-time patient-centered documents, potentially turning them into highly detailed medical dossiers for research purposes.

Adding wearable data introduces concerns about continuous behavioral data being used for surveillance, potentially without clinical context or oversight.

The platform may include private sources like Fitbit or Apple, but participants may not fully understand the scope of data sharing.

NIH’s “All of Us” program collects wearable data, indicating that once centralized, data systems tend to expand rather than shrink.

The platform will incorporate immutable genomic and lab results, raising concerns about the permanent storage of sensitive genetic data.

The U.S. Constitution didn’t envision centralized health data storage; states already run effective surveillance programs with local oversight.

Expanding autism research doesn’t require a massive federal system, as existing programs already collect meaningful data with ethical guidelines.

A national platform with no clear limits or oversight could create long-term surveillance risks, with potentially unintended consequences.

History shows that once surveillance powers are granted, they tend to expand, increasing the risk of data misuse and control.

Centralizing genomic and behavioral data raises concerns about creating a surveillance tool for profiling, control, or political purposes.