RFK Jr. Pushes to Open Patient Health Data to Researchers — SkimNews
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- Robert F. Kennedy Jr. told a Monday MAHA Institute event that user agreements let "industry gatekeepers" decide who can study health data and what questions they can ask, creating "protectionism in science" and "politicization of science."
- Kennedy proposed aggregating immunization records, clinical data, lab results, pharmacy information, and claims from state health information exchanges, EHRs, labs, Medicare, Medicaid, and commercial platforms like HealthVerity for federal researchers.
- Nebraska's CyncHealth has shared patient data with the federal government through two previously unannounced partnerships — one with the CDC on vaccines and autism reported earlier by KFF Health News, and a second with the NIH on chronic disease, per MAHA Institute President Mark Gorton.
- Jamie Bland, who led CyncHealth until late last year, became chief data strategist of the MAHA Institute in April, tying Nebraska's exchange directly into MAHA's research push.
- Other state health information exchanges declined to share data with the government, and Arizona's exchange cannot be used — even de-identified — for researcher grants without provider consent, said former White House health care economist Jonathan Ketcham.
- HealthVerity CEO Andrew Kress said the barrier is "data governance, data ownership, data privacy," not technical limits, noting hospitals often sell de-identified data or tightly restrict access through data use agreements.
- Former national health IT coordinator Donald Rucker said linking immunization registries to HIEs could already answer vaccine safety questions, while CMS Health Tech Ecosystem official Chris Klomp has framed HHS's stance as "liberate patient records."
Why it matters: Kennedy frames expanded federal access to patient records as essential to studying chronic disease, but state-level rules are the real bottleneck: Arizona explicitly bars de-identified research use without provider consent, and most other state exchanges have refused similar federal sharing. The Nebraska-CDC and Nebraska-NIH partnerships — neither publicly announced — give MAHA a proof-of-concept, and Gorton says scaling requires other states to invest in "data governance" infrastructure he calls "mundane yet crucial."
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