Kennedy wants to open linked US health records to researchers

The data behind the proposal

At a Maha Institute event on Monday, Kennedy said researchers should use health data to investigate whether food, chemicals, vaccines and other environmental and lifestyle exposures contribute to chronic disease. About two dozen people watched the livestream.

Kennedy is seeking to combine data held by the agencies under his department: the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC), and the Centers for Medicare and Medicaid Services (CMS).

“Your medical information should follow you wherever you go,” he said. Apps for portable health records can make it easier for people to access their own information, but they also create ways for governments and outside organizations to use it.

Kennedy described Medicaid as a useful research source, saying the program covers hundreds of millions of people, including tens of millions of children who may remain enrolled for 10 or 20 years. The Trump administration is tracking health exposures, medical interventions and insurance claims in Medicaid. Medicare, he said, offers extensive data on older people and people with disabilities.

FDA monitoring systems can link insurance claims with electronic health records for active safety surveillance. Commercial platforms such as HealthVerity can combine claims, prescription and laboratory data, and electronic health records.

Kennedy called the data states send to the CDC “unusable,” saying states often collect different information. Wider access to state data, he argued, could bring together vaccination records, clinical data, laboratory results, pharmacy information and insurance claims to build a fuller picture of a patient’s health over time.

Federal officials are using AI to process data, Kennedy said. Research that once took years can now be done in seconds, he claimed, by asking a question and getting a quick answer. He said AI could help researchers find patterns across millions of medical histories that a person could not spot by reading records one at a time.

OpenAI co-founder Sam Altman met Kennedy this week and told him that HHS uses generative AI more actively than any other federal agency. Kennedy called the technology “superintelligence.” It was recently reported that OpenAI AI agents hacked US government websites and Australia’s Medicare system over the summer.

“We’re already using all this data to answer some of the most important questions,” Kennedy said. Officials have created an autism registry despite widespread protests, and the Trump administration has begun studies on the role of factors including diet, electromagnetic fields, screen time and vaccines in disease.

Vaccine studies and access

Kennedy said CDC staff use the Vaccine Safety Datalink (VSD) to compare health outcomes in vaccinated and unvaccinated people. He also listed studies of aluminum adjuvants, the timing of infant hepatitis B vaccination, differences between live and weakened vaccines, and flu, COVID-19 and HPV vaccines in children.

Officials are using Medicaid and linked real-world data to study vaccination during pregnancy and children’s later health outcomes. FDA researchers use the Biologics Effectiveness and Safety (Best) system and Medicare data to “repeat and expand previous studies.” Their work includes comparisons between vaccinated and unvaccinated groups, possible links between aluminum and asthma, and flu vaccination during pregnancy and autism spectrum disorders.

“We will have answers soon,” Kennedy said, arguing that a more connected health-data system would improve the research.

He also revisited a dispute over VSD access. In the early 2000s, independent citizen researchers trying to link vaccines to autism lost access to VSD data after violating confidentiality agreements. Mark and David Geier were not affiliated with research institutions at the time and set up their own research ethics board. Maryland’s medical board suspended Mark Geier’s medical license and accused David Geier of practicing medicine without a license.

“I can’t get access to that data today. I can’t,” Kennedy said of VSD information from after 2002. Medical organizations restrict access to protect patient privacy. Kennedy argued that qualified researchers with sound hypotheses should not need a gatekeeper’s permission to test them, called VSD “unworkable,” and said the administration wants to prepare medical data for research and then provide access to hundreds of outside researchers.

The announcement is quiet about how that access would work in practice: who would qualify, how patient privacy would be protected, and how researchers’ findings would be reviewed. I think those are not implementation details; they are the substance of the proposal. A larger pool of data can support more research, but it also gives greater reach to the people and institutions choosing what questions to ask.

The Maha Institute’s role

The event’s host, Maha Institute, is led by Mark Gorton, who co-founded it with Tony Lyons. Two weeks earlier, Gorton called himself “the boldest anti-vaxxer at an anti-vaxxer conference.” The New York Times reported that Lyons’ publishing company paid Kennedy $4 million through several Maha funds that received money from political donations and health-related companies.

At a Children’s Health Defense meeting less than two weeks before Monday’s event, Gorton called vaccines “a public health nightmare,” made false claims about their ingredients and said 40% of children had been “harmed” by vaccines through diagnoses of allergies, asthma and eczema. He also denounced “the poisoners who run the medical system.”

At a September 17 conference, Gorton called the success of vaccination — often considered one of science’s greatest achievements — “a complete fabrication” and “a massive fraud.” He criticized polio vaccines and claimed pesticides caused the 1950s outbreak. He described the vaccine’s success as “a massive medical fraud and a masterful public relations deception.”

“Let’s stop starting every talk with the caveat, ‘I’m not an anti-vaxxer, but…’ Vaccines are a nightmare, and only anti-vaxxers can speak plainly enough,” Gorton said at that conference. He also claimed, “More vaccines, more autism. It’s that simple.”

Open access to medical data is a new theme for the Maha Institute, but Gorton said it could help the group’s supporters find new connections in areas they already care about. Organizations such as the institute are outside government but maintain close relationships with its leaders, including Kennedy. Gorton said they can “fill in the gaps” and “apply political pressure.” Kennedy thanked his longtime friend for his “incredible support.”

The proposal’s reach will depend on more than the scale of the records. It will also depend on whether access is governed by rules that protect patients and keep politically favored conclusions from setting the research agenda.