HHS Seeks State Health Data for Autism and Vaccine Studies

The Department of Health and Human Services is requesting detailed, identifiable patient records from state-run health information exchanges to study possible connections between vaccines, autism, and chronic disease. Health information exchanges allow hospitals and clinics to share medical histories, prescription data, and clinical notes.

Federal officials have asked exchange operators how these records could support vaccine-safety research, according to seven people who attended or were briefed on the meetings.

Behm, who leads Maryland’s exchange, said his organization declined to provide additional data after determining that existing agreements do not permit sharing for this purpose. John Kansky, CEO of the Indiana Health Information Exchange, said Indiana is still reviewing the request.

Jaime Bland, former CEO of Nebraska’s CyncHealth exchange, told KFF Health News that several states are exploring ways to supply more data to federal researchers.

HHS spokesperson Emily Hilliard said the department is “strengthening public health surveillance” under Secretary Kennedy’s agenda but did not answer questions about the number of participating states, data volume, privacy protections, or spending. Kennedy said in a May interview that federal record systems are “broken” and that new state databases now allow studies on autism, vaccine safety, and chronic disease.

He added that “a whole pipeline of studies” is planned for the coming year. Most exchanges operate under state laws and contractual limits on data access. Officials have not released details on how any new federal collection would be secured or used.