Kennedy’s team seeks access to Americans’ medical records

U.S. Health and Human Services is seeking access to detailed, identifiable medical records stored in state health information exchange systems as Robert F. Kennedy Jr. presses for studies he says could link vaccines and autism. State health leaders raised lega

On a May day when Robert F. Kennedy Jr. talked about taking on medical data “broken” systems could not properly deliver, he framed the stakes in plain terms: he said his team needed better health record access to study autism’s causes, vaccine safety, and chronic disease.

Now, the push has moved from a promise to a practical request—one that has unsettled state public health leaders who operate the systems that would be used to share the records.

The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed. identifiable patient information. KFF Health News has learned. In private meetings. some public health leaders objected to giving Kennedy’s team access to the kind of information those systems can carry. raising questions about whether the move is legal and whether the data would be useful. They also worried that federal access could mean seeing doctors’ notes, prescription history, and other private details. HHS has not offered insight into how it would protect or handle any personal health information it obtains.

Kennedy told KFF Health News that medical records are key to investigating the cause of autism, vaccine safety, and chronic diseases. He also said his advisers and he were frustrated that federal access to Americans’ medical records has been limited.

“We need a good health record system. and one of the things that really surprised me most when I came into office is that there is — that the systems are broken. ” Kennedy said in a May interview. “We’ve had to go to the states and. luckily. we’ve got a lot of cooperation from the states. but we now have databases together that we can actually do the studies on. Those studies are in motion.”.

The medical establishment has spent decades studying the relationship between vaccines and autism, and it has rejected any link.

HHS has not publicly announced any new projects involving medical records and autism or vaccine research. Kennedy faced blowback last year when he proposed compiling the medical records of people with autism to create a federal disease registry. a plan health department officials later disputed as underway. But in May, Kennedy said, “We have a whole pipeline of studies that will be done over the next year.”.

Those studies are happening as political winds shift. The White House has steered Kennedy away from further changes to U.S. vaccine policy ahead of November’s crucial midterm elections. Still. President Donald Trump has echoed Kennedy’s doubts about vaccine safety. and last week Trump signed an executive order calling for the U.S. to reduce the number of vaccines recommended for children.

Kennedy’s political appointees and allies—among them William “Reyn” Archer III, a former Texas health official and vaccine critic whom Kennedy hired as a senior adviser—have led the initiative for the health department to collect and examine medical records.

Over the past year. federal officials met with leaders of state-run health information exchange systems several times and asked how the personal medical records those systems maintain could be used for vaccine research. according to seven people who participated in the discussions or were familiar with them.

Craig Behm. who runs the Maryland health information exchange. said Kennedy’s team asked about how the trove of medical records stored by those exchanges could be used to study vaccines. Behm recalled being asked by a top official at HHS’ health information technology office: “If this administration wants to conduct research on the effectiveness of vaccines. are you saying you all can help us conduct that research?”.

Last June. Behm and leaders of other state exchanges met with Kennedy’s top advisers to discuss sharing more medical data with federal agencies. The state organizations followed up with a pitch in October for a new surveillance system that would give the federal health department “real-time. 24-hour data feeds on opioid and chronic disease trends” within a year. according to a presentation reviewed by KFF Health News. Under that proposal, HHS would get data from 90% of the population’s medical records by 2028.

Administration officials repeatedly asked during the meetings how the records could be used to monitor vaccine safety. Kennedy has rejected the federal government’s current vaccine-monitoring systems. which have been grounded in decades of research showing immunizations are safe and effective for most people.

“Vaccine safety. or whatever words you want to use. has come up pretty consistently in those conversations. ” said John Kansky. CEO of the Indiana Health Information Exchange. Kansky sees potential in sharing information from the exchanges for public health but is worried about the vaccine focus: “It’s like. oh man. I wish you would have picked something that pushed fewer buttons for people.”.

Nearly every state has at least one health information exchange. Often regulated by state laws and run by private companies or nonprofits. these systems enable hospitals and health systems to share patients’ medical records immediately—so doctors and nurses can quickly pull up nearly anyone’s medical history in emergency rooms or share after-visit summaries and notes with patients’ primary care providers. In certain circumstances. including cases of infectious diseases like measles or flu. the exchanges notify public health authorities such as a state health department or the Centers for Disease Control and Prevention.

Using exchanges for broader public health purposes is not an unusual idea. but health officials say it can create privacy. legal. and ethical problems. For Behm. the concern was specific: the Maryland exchange declined to share more data with the federal government for vaccine research. he said. noting that sharing medical records for that purpose would require approvals from hospitals. state political leaders. and research boards. Any new data-sharing agreement, Behm added, should have a clear, detailed framework outlining what would be shared and with whom.

“A number of us said, ‘We can’t do anything our agreements don’t allow us to do, so no,’” Behm said. Behm said most health information exchanges have contractual restrictions on who can access clinical data.

Kansky said Indiana was still weighing whether to provide additional data for Kennedy’s project and that nothing had yet been shared.

HHS spokesperson Emily Hilliard did not answer questions about how many states are participating in Kennedy’s project. what new data the agency is collecting. how much the federal government is spending on the initiative. how patient privacy is being protected. or who has access to any data. In an emailed statement. Hilliard said: “HHS is strengthening public health surveillance and modernizing data systems to better understand and combat the childhood chronic disease epidemic as part of Secretary Kennedy’s Make America Healthy Again agenda. ” and added. “Americans deserve robust systems to monitor the drivers of chronic illness.”.

Kennedy has asserted, without evidence, that vaccines can cause chronic illness.

For all the resistance in some states, at least one has moved in Kennedy’s direction.

The former leader of Nebraska’s state health information exchange has led the effort to share data from medical records with the federal government.

Jaime Bland, former CEO of CyncHealth—the Nebraska health information exchange used by most hospitals and health systems in the state—said several states are looking to “open up channels” to provide more analysis to Kennedy’s team.

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told KFF Health News.

Bland was among a group who proposed that CyncHealth would help kick off the initiative, according to a 43-slide PowerPoint presented to federal officials during an October meeting.

CyncHealth and other state health information exchanges would “ingest data from hospitals. clinics. laboratories. pharmacies. payers. and social services agencies. ” then “link claims and clinical records through a master patient index.” Data from the exchanges “will be deidentified where appropriate. ” according to one slide.

The federal government would pay the exchanges for furnishing the records, according to the proposal: $3 a person, annually.

Officials would also “frame publicly that this is not a new database, but a federated trust model that delivers real-time data for all HHS missions,” the presentation reads.

After the October meeting, Nebraska’s health department was awarded a large grant from the CDC, and CyncHealth in turn received millions of dollars from the state.

On Dec. 19, the CDC announced new funding under its Epidemiology and Laboratory Capacity program—money that sends money to state and local health departments for lab work, health information enhancements, and solutions for outbreaks.

Nebraska’s state health department was awarded $18.7 million, the most of any state last year despite Nebraska being the 38th most populous state. Texas received $9.2 million, and California got $10.8 million.

CyncHealth was then awarded three contracts totaling $13.6 million from the state health department weeks later, on Jan. 9 and Jan. 16, according to a publicly accessible database of state contracts.

Grace McNamara, a spokesperson for CyncHealth, said the organization retained $2.4 million of the funding for Kennedy’s project; the remaining money was distributed to “other participating states and various vendor organizations for implementation support.”

A former CDC official who was aware of the transaction, but not authorized to speak publicly about it, confirmed the money was intended for CyncHealth to supply data for Kennedy’s initiative to look at vaccines and autism.

McNamara said the project described by her organization is different in purpose: “The referenced project is not research. but rather a proof-of-concept project on how health information exchange and public health can work together to improve health outcomes and is not specific to autism. ” she said in an emailed statement.

McNamara did not answer questions about what type of medical data is being provided to the federal health department or whether patients’ identifying information is removed.

Bland left her post at CyncHealth—where she was paid nearly $420,000 a year—in December. She was named in April as the chief data strategist for the MAHA Institute, a think tank founded by allies of Kennedy and Trump to advance their Make America Healthy Again movement.

Bland agreed with Kennedy that data from state health information exchanges could provide more insight into autism’s causes or vaccine injuries.

“The data is so fragmented. so modeled when it comes to population health and public health. that we lose sight of the individual stories. ” Bland said. She told a story she had heard about a woman who had a seizure after receiving the HPV vaccine. “You know, the vaccine is safe — it absolutely is — but it wasn’t safe for her,” Bland said. “As public health officials, we say the vaccine is safe. But there are cases where it is not.”.

Daniel Jernigan, a former top CDC official who left the agency last summer, said he tried to point Kennedy to data that would help the health secretary study vaccine safety and autism.

After 31 years at the CDC overseeing public health surveillance. emerging infectious diseases. and the influenza divisions. Jernigan said the solution seemed straightforward. The secretary could work with researchers to obtain huge databases pulled from health systems nationwide. maintained by major electronic health records companies. Jernigan said those databases are deidentified, meaning they don’t include patient names or other information that can identify individuals.

Jernigan said Kennedy didn’t seem interested.

Instead. Jernigan said. as The New York Times first reported. the health secretary dispatched two top advisers—Archer and Hannah Anderson. his former deputy chief of staff—to the CDC’s headquarters in Atlanta last July to download millions of identifiable patient records directly from the Vaccine Safety Datalink. the system the health agency uses to investigate complications from vaccines. Jernigan said those records were decades old.

Jernigan said the federal government has limited legal authority to access medical records from state health information exchanges. In any case. he argued. examining those records may offer a view of a person’s medical history that will not necessarily answer Kennedy’s questions about vaccines and autism.

“If they’re just using the electronic health record data, there are limits to that,” Jernigan said. “If they’re only looking at electronic health record data, all you’re going to get is what was captured in the encounter. It’s not going to be very satisfying.”

Robert F. Kennedy Jr. HHS medical records health information exchange vaccines autism chronic disease privacy data sharing CDC Nebraska CyncHealth Vaccine Safety Datalink opioid surveillance