Federal public health agencies announced on Wednesday the start of a pilot program to share Medicare and Medicaid data with the National Institutes of Health to tackle chronic diseases, starting with autism. 

The new partnership between the NIH and the Centers for Medicare and Medicaid Services comes on the heels of Health and Human Services Secretary Robert F. Kennedy Jr. announcing last month his plan to identify the cause of autism within the year and develop a patient database for those diagnosed with autism spectrum disorder, or ASD.

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Kennedy said in a press release about the NIH-CMS partnership that the arrangement is meant “to uncover the root causes of autism and other chronic diseases.”

“We’re pulling back the curtain—with full transparency and accountability—to deliver the honest answers families have waited far too long to hear,” said Kennedy.

The data-sharing between CMS and NIH follows the same process that health researchers in a university or non-profit organization setting would use to gain access to Medicare and Medicaid enrollee data, and is de-identified to maintain patient privacy protocols. 

Autism research at the NIH using the CMS data is expected to focus on autism diagnoses over time, health outcomes for medical and behavioral interventions, demographic and geographic disparities, and “the economic burden on families and healthcare systems,” according to the press release.

Although studying autism is the first goal of the Kennedy HHS, the agency stressed in the announcement of the new NIH-CMS partnership that this data exchange will inform other projects for chronic disease, possibly making a seismic shift in federal biomedical research. 

NIH Director Dr. Jay Bhattacharya said in a statement that the data-sharing agreement is “an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives.” 

Bhattacharya said last month that his agency has been working on amassing medical records from both federal and commercial databases to create a comprehensive picture of patient data. 

Both Bhattacharya and CMS Administrator Dr. Mehmet Oz, during their respective confirmation hearings, made reference to the difficulties of obtaining patient data collected by different agencies within HHS, lamenting that agencies have historically been competitive with one another over their spheres of influence. 

“Linking CMS claims data with a secure real-world NIH data platform, fully compliant with privacy and security laws, will unlock landmark research into the complex factors that drive autism and chronic disease – ultimately delivering superior health outcomes to the Americans we serve,” Bhattacharya said in a statement Wednesday.

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Autism advocates have expressed deep reservations about Kennedy’s plans for a broader ASD registry to track individuals with autism diagnoses. Advocacy groups have also derided Kennedy for describing autism as a “preventable disease,” which they argue is stigmatizing. 

The HHS announcement highlighted that one in 31 children in the United States has an autism diagnosis, according to the Centers for Disease Control and Prevention. The CDC estimated, as of 2023, that 26.7% of those with ASD have profound autism, defined as being non-verbal, minimally verbal, or having an IQ lower than 50.