"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," stated Health Secretary Robert F. Kennedy Jr., revealing a push to access vast troves of identifiable patient data from state-run health information exchanges to investigate potential links between vaccines and autism, a hypothesis largely rejected by the scientific community.
U.S. Health Secretary Robert F. Kennedy Jr. is actively pursuing federal government access to a significant portion of Americans’ medical records, driven by his stated objective to research a potential link between vaccines and autism. This initiative involves seeking data from state-level health information exchanges (HIEs), systems designed for secure patient data sharing among healthcare providers. The move has sparked significant debate and concern among some public health leaders, who question the legality, utility, and privacy implications of granting the federal government such extensive access to sensitive personal health information. Despite the medical establishment’s long-standing consensus, supported by decades of research, that vaccines are safe and effective, Kennedy and his allies maintain that a thorough examination of comprehensive medical records is crucial for understanding the causes of autism and other chronic diseases.
The Department of Health and Human Services (HHS) is reportedly engaging with state-run HIEs, which facilitate the exchange of detailed, identifiable patient information between hospitals and clinics. These HIEs serve as critical infrastructure for modern healthcare, enabling clinicians to access a patient’s complete medical history, including doctor’s notes, prescription history, and diagnostic reports, at the point of care. This capability is essential for timely and effective treatment, particularly in emergency situations or when coordinating care among multiple specialists. However, the prospect of the federal government accessing this data for research purposes has raised red flags regarding patient privacy and data security.
Sources familiar with private discussions reveal that some public health officials have voiced strong objections to granting Kennedy’s team access to these sensitive records. Concerns have been raised about the legal basis for such access and whether the data, even if obtained, would genuinely yield the insights sought. The potential for the federal government to scrutinize the minutiae of Americans’ medical histories, without a clear outline of how this information will be protected or handled, has amplified these anxieties. HHS has offered little public insight into its data protection protocols for this initiative.
Secretary Kennedy, however, has been vocal about his belief that comprehensive medical records are indispensable for investigating the etiology of autism, assessing vaccine safety, and understanding the rise of chronic diseases. His efforts have reportedly been bolstered by significant grant funding directed towards a Nebraska-based nonprofit organization that has been instrumental in facilitating this data access. Kennedy and his advisors have expressed frustration with the perceived limitations on federal access to Americans’ medical records, viewing these restrictions as impediments to crucial research.
"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 stated in a May interview. He elaborated, "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."
While HHS has not made any public announcements regarding new projects focused on medical records and autism or vaccine research, Kennedy faced considerable backlash last year for proposing the creation of a federal disease registry by compiling the medical records of individuals with autism. Health department officials later clarified that such a project was not underway. Nevertheless, Kennedy indicated in May that a "whole pipeline of studies" is slated for completion over the next year.
The White House has reportedly advised Kennedy to refrain from pursuing further changes to U.S. vaccine policy in the lead-up to the crucial midterm elections. However, President Donald Trump has frequently echoed Kennedy’s skepticism regarding vaccine safety, recently signing an executive order aimed at reducing the number of recommended childhood vaccines.
The initiative to collect and examine medical records has been spearheaded by Kennedy’s political appointees and allies. Among them is William "Reyn" Archer III, a former Texas health official and vocal vaccine critic, whom Kennedy appointed as a senior adviser. Archer, alongside other advisors, has been actively involved in the health department’s efforts to gather and analyze medical data.
Federal officials have held multiple meetings with leaders of state-run HIE systems over the past year, inquiring about the potential uses of the personal medical records they manage for vaccine research. Seven individuals with knowledge of these discussions confirmed these meetings. Craig Behm, who oversees the Maryland Health Information Exchange, recounted that Kennedy’s team specifically asked about leveraging the extensive medical records stored by HIEs for vaccine studies.
"If this administration wants to conduct research on the effectiveness of vaccines, are you saying you all can help us conduct that research?" Behm recalled being asked by a senior official within HHS’s health information technology office.
In June of the previous year, Behm and leaders from other state HIEs convened with Kennedy’s top advisers to discuss the possibility of increased medical data sharing with federal agencies. These state organizations subsequently presented a proposal in October for a new surveillance system designed to provide the federal health department with "real-time, 24-hour data feeds on opioid and chronic disease trends" within a year. The proposal, reviewed by KFF Health News, aimed for HHS to gain access to approximately 90% of the nation’s medical records by 2028. Administration officials consistently inquired during these meetings about how the records could be utilized for vaccine safety monitoring, a pursuit Kennedy has undertaken despite the overwhelming scientific consensus on vaccine safety.
"Vaccine safety, or whatever words you want to use, has come up pretty consistently in those conversations," noted John Kansky, CEO of the Indiana Health Information Exchange. While Kansky acknowledges the potential public health benefits of sharing HIE data, he expressed reservations about the specific focus on vaccines, stating, "It’s like, oh man, I wish you would have picked something that pushed fewer buttons for people."
A System to Monitor Chronic Disease
Health Information Exchanges, operating in nearly every state, are typically governed by state laws and managed by private companies or non-profit entities. They enable hospitals and health systems to share patient medical records seamlessly. This functionality allows healthcare providers to quickly access a patient’s medical history, crucial for informed decision-making in settings like emergency rooms, and facilitates the sharing of post-visit summaries and notes with primary care physicians.
In specific circumstances, such as the monitoring of infectious diseases like measles or influenza, HIEs can notify public health authorities, including state health departments and the Centers for Disease Control and Prevention (CDC). While extending the use of HIEs for broader public health purposes is not inherently unusual, health officials warn that it can introduce significant privacy, legal, and ethical complications.
Behm stated that his organization in Maryland ultimately declined to share additional data with the federal government for vaccine research, citing the need for numerous approvals from hospitals, state political leaders, and research boards. He emphasized that any new data-sharing agreement must include a clear and detailed framework outlining the scope of shared information and the recipients. "A number of us said, ‘We can’t do anything our agreements don’t allow us to do, so no,’" Behm recounted, highlighting the contractual restrictions most HIEs have regarding access to clinical data. Kansky indicated that Indiana is still evaluating whether to provide additional data for Kennedy’s project, and no information has been shared to date.
HHS spokesperson Emily Hilliard did not respond to specific questions regarding the number of participating states, the types of new data being collected, the federal investment in the initiative, patient privacy protections, or data access protocols. "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," Hilliard stated in an email. "Americans deserve robust systems to monitor the drivers of chronic illness." Kennedy has, without presenting evidence, asserted that vaccines can cause chronic illnesses.
A Kennedy Partner in Nebraska
At least one state has demonstrated cooperation. The former leader of Nebraska’s state health information exchange has taken a lead role in efforts to share medical record data with the federal government. Jaime Bland, former CEO of CyncHealth, the Nebraska HIE utilized by most hospitals and health systems in the state, suggested that several states are exploring ways to "open up channels" for increased data analysis by 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 part of a group that proposed CyncHealth’s involvement in initiating this effort, as detailed in a 43-slide PowerPoint presentation to federal officials in an October meeting. The presentation outlined a plan for CyncHealth and other state HIEs to "ingest data from hospitals, clinics, laboratories, pharmacies, payers, and social services agencies" and then "link claims and clinical records through a master patient index." Slides indicated that data from the exchanges "will be deidentified where appropriate." The proposal suggested the federal government would compensate the HIEs at a rate of $3 per person, annually, for furnishing the records. The presentation stated that officials would "frame publicly that this is not a new database, but a federated trust model that delivers real-time data for all HHS missions."
Following this meeting, Nebraska’s Department of Health received a substantial grant from the CDC, and CyncHealth subsequently received millions of dollars from the state. On December 19, the CDC announced new funding under its Epidemiology and Laboratory Capacity program, which allocates funds to state and local health departments for laboratory work, health information enhancements, and outbreak response. Nebraska’s state health department was awarded $18.7 million, the largest sum awarded to any state that year, despite Nebraska being the 38th most populous state. For comparison, Texas received $9.2 million, and California received $10.8 million. CyncHealth was subsequently awarded three contracts totaling $13.6 million from the state health department in January, according to a public database of state contracts.
Grace McNamara, a spokesperson for CyncHealth, confirmed that the organization retained $2.4 million of the funding for Kennedy’s project, with the remaining funds distributed to "other participating states and various vendor organizations for implementation support." A former CDC official, who was privy to the transaction but not authorized to speak publicly, confirmed that the funds were intended for CyncHealth to supply data for Kennedy’s initiative to examine vaccines and autism. McNamara stated that the "work is focused on improving outcomes related to acute and chronic illnesses." She further clarified in an emailed statement, "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." McNamara did not respond to questions regarding the type of medical data being provided to the federal health department or whether patient identifying information is removed.
Bland departed from her position at CyncHealth in December, where she earned nearly $420,000 annually. In April, she was appointed chief data strategist for the MAHA Institute, a think tank established by allies of Kennedy and Trump to advance their "Make America Healthy Again" movement. Bland shares Kennedy’s view that data from state HIEs could offer greater insights into the causes of autism 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 commented. She recounted a story about a woman who experienced a seizure after receiving the HPV vaccine, stating, "You know, the vaccine is safe – it absolutely is – but it wasn’t safe for her. As public health officials, we say the vaccine is safe. But there are cases where it is not."
Daniel Jernigan, a former senior CDC official who left the agency last summer, suggested that Secretary Kennedy could pursue research on vaccine safety and autism by collaborating with researchers to access large databases maintained by major electronic health record companies. These databases are typically de-identified, meaning they exclude personal identifiers. Jernigan noted that Kennedy did not appear receptive to this approach. Instead, as The New York Times first reported, the health secretary dispatched two top advisers, Archer and Hannah Anderson, to the CDC’s headquarters to download millions of identifiable patient records directly from the Vaccine Safety Datalink, a system used by the agency to investigate vaccine complications. However, these records were decades old.
Jernigan indicated that the federal government has limited legal authority to access medical records from state HIEs. Furthermore, he cautioned that examining such records might offer a historical view of a person’s medical history but may not necessarily provide definitive answers to Kennedy’s specific questions about vaccines and autism. "If they’re just using the electronic health record data, there are limits to that," Jernigan stated. "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."
