U.S. Health Secretary Pursues Access to Medical Records

Robert F. Kennedy Jr., the U.S. health secretary, is pushing for federal access to medical records of many Americans. His goal? To explore a potential connection between vaccines and autism — a theory that the medical community has firmly examined and dismissed for years.

The Department of Health and Human Services (HHS) is on the lookout for information from obscure state systems that facilitate the sharing of detailed patient information among hospitals and clinics, according to KFF Health News.

Some public health leaders have raised concerns in private meetings about granting Kennedy’s team access to this data, questioning both its legality and the value of the information. There are worries, too, about the implications of the federal government having the ability to scrutinize intricate details of Americans’ health records, which could include anything from doctors’ notes to a patient’s prescription history. So far, HHS hasn’t clarified how it plans to safeguard the personal health information it may collect.

Despite these objections, Kennedy emphasized to KFF Health News that medical records are essential for investigating autism causes, vaccine safety, and chronic illnesses. Notably, a significant amount of grant funding has reportedly flowed into a Nebraska nonprofit aiding Kennedy’s mission, as per state documents.

Frustrations have arisen among Kennedy and his advisors regarding the limited access to Americans’ medical records for federal studies.

“When I came into office, I was surprised to learn how broken the systems are,” Kennedy remarked in a May interview. He noted that while they’ve managed to collaborate with states, they still need a reliable health record system to facilitate their studies.

HHS hasn’t made any public announcements regarding new initiatives tied to medical records and autism or vaccine research. Kennedy faced backlash last year after suggesting a federal registry for individuals with autism — a proposal that health department officials later disputed.

In May, Kennedy stated, “We have a series of studies that will take place over the next year.”

Even as the White House has attempted to steer Kennedy away from altering U.S. vaccine policy before the upcoming midterm elections, President Donald Trump has frequently echoed Kennedy’s skepticism about vaccine safety, most recently signing an executive order aimed at reducing the number of recommended vaccines for children.

Kennedy’s political associates — including former Texas health official William “Reyn” Archer III, who is a known vaccine skeptic — are leading the charge for the health department’s data collection efforts.

Recently, federal officials have had discussions with the leaders of state-run health information exchange systems about how personal medical records might be utilized for vaccine research. Craig Behm, who manages the Maryland health information exchange, shared that Kennedy’s team inquired about leveraging their extensive stores of medical records for this research.

Behm recalled being asked by a top HHS official if they could assist in studying vaccine effectiveness. In June, Behm and leaders of other state exchanges had meetings with Kennedy’s advisors focused on increasing data sharing with federal agencies. They proposed a new system that would feed real-time data on opioid and chronic disease trends, which could eventually provide HHS with data from 90% of the population’s medical records by 2028.

During those meetings, the administration often questioned how to utilize these records to monitor vaccine safety. Kennedy has been critical of existing federal vaccine-monitoring systems, despite widespread research affirming that vaccinations are generally safe and effective for most individuals.

John Kansky, the CEO of the Indiana Health Information Exchange, noted that vaccine safety discussions were prevalent in the meetings. He sees potential benefits in sharing information for public health but expressed concern about the vaccine focus; “I wish that you would have chosen something less contentious for public opinion.”

Most states have at least one health information exchange, typically managed by private entities or nonprofits, allowing for the rapid sharing of patient records among hospitals and health systems. These systems enable swift access to a patient’s medical history in emergencies and sharing follow-up notes with primary care providers.

While these exchanges can notify public health authorities about infectious diseases, using them for broader public health objectives can complicate matters surrounding privacy and legality, officials caution.

Ultimately, Behm indicated that his Maryland organization declined to share additional data with the federal government for vaccine research. He pointed out that such sharing would require multiple approvals from hospitals, state politicians, and review boards. Any data-sharing agreements would need a detailed outline of what information would be shared and with whom, he emphasized.

“We can’t act outside of what our agreements allow,” Behm stated. Most health information exchanges have strict contracts governing access to clinical data.

Kansky mentioned that Indiana is still weighing its options regarding contributing extra data for Kennedy’s project, noting no information has been exchanged yet.

HHS spokesperson Emily Hilliard did not provide details on the number of states backing Kennedy’s project, the type of new data being collected, the funding for the initiative, patient privacy safeguards, or who can access the data.

In her emailed statement, Hilliard mentioned, “HHS is modernizing data systems to enhance public health surveillance as part of Secretary Kennedy’s Make America Healthy Again agenda. Americans deserve effective systems to monitor chronic illness drivers.”

Kennedy has made unfounded claims that vaccines might lead to chronic health issues.

On the cooperative front, at least one state has been more willing. The previous leader of Nebraska’s health information exchange is actively promoting data sharing with the federal government.

Jaime Bland, the former CEO of CyncHealth, has reportedly said multiple states are eager to facilitate data analysis for Kennedy’s team.

“They’re reexamining the data and providing some insights back to the CDC,” Bland shared.

Bland was part of a proposal that CyncHealth would spearhead this initiative, based on a detailed presentation to federal officials in October.

CyncHealth and other state exchanges would gather data from hospitals, clinics, laboratories, pharmacies, payers, and social services, linking the information for comprehensive insights.

Data will be deidentified when necessary, according to one of the slides from the presentation.

The federal government is expected to pay the exchanges $3 per person each year for supplying this data.

Officials plan to clarify publicly that this initiative isn’t creating a new database but is a model for sharing real-time data for a range of HHS missions.

After these meetings, Nebraska’s health department was granted funding from the CDC, while CyncHealth subsequently secured millions from the state.

On December 19, the CDC announced new funding for state and local health departments for health enhancements, including lab work and outbreak management.

Nebraska received $18.7 million, the most of any state despite its smaller population. For context, Texas received $9.2 million while California received $10.8 million.

Shortly after, CyncHealth was awarded three contracts worth $13.6 million from the state health department, as noted in public contract databases.

CyncHealth spokesperson Grace McNamara indicated that $2.4 million of the funding went towards Kennedy’s initiative, with the remaining funds allocated for various participating states and vendors.

A former CDC official, who chose to remain anonymous, confirmed that the funding was intended to support CyncHealth in supplying data for Kennedy’s vaccine-related initiative. McNamara clarified that the work isn’t strictly about autism but aims at enhancing health outcomes related to chronic illnesses.

She did not clarify what medical data was shared with the federal health department or if patients’ identifying information was excluded.

Bland left her role at CyncHealth, where she earned nearly $420,000 a year, in December, and was appointed as chief data strategist for the MAHA Institute, a think tank tied to Kennedy and Trump.

Bland concurred with Kennedy that data from health information exchanges could yield more insights into autism or vaccine-related issues.

“The data is so fragmented that we miss individual stories,” she noted, recounting a story about a woman who experienced a seizure after receiving the HPV vaccine.

“The vaccine is generally safe — absolutely — but it wasn’t safe for her,” Bland remarked. “While we, as public health officials, claim that vaccines are generally safe, there are indeed exceptions.”

Former top CDC official Daniel Jernigan, who recently left the agency, advised Kennedy on data that could assist in studying vaccine safety and autism.

Having spent over three decades at the CDC overseeing crucial health divisions, Jernigan thought the solution could be straightforward: partnering with researchers to access extensive databases from major electronic health record firms.

These databases are deidentified, meaning they lack identifiable patient data, and Jernigan felt Kennedy wasn’t particularly interested in this approach.

Instead, as reported earlier, the health secretary sent his advisors to the CDC in July to directly obtain millions of identifiable patient records from the Vaccine Safety Datalink, a database for investigating vaccine complications. However, these records are quite dated.

Jernigan expressed that the federal government’s authority to access medical records from state health information exchanges is limited. Moreover, he indicated that looking at these records might not yield answers for Kennedy’s inquiries about vaccines and autism.

“If the focus is solely on electronic health record data, the insights will be limited to what’s captured during encounters,” Jernigan explained. “This approach may not lead to satisfying conclusions.”