Yves here. It’s evident that Robert F. Kennedy Jr.’s campaign is veering towards eroding the remnants of privacy. His stated goal is to investigate unfounded beliefs regarding the origins of autism, which are understood to be primarily genetic and prenatal, while also challenging the safety of vaccinations. In doing so, he risks dismissing beneficial vaccines entirely. Although it is essential to scrutinize certain vaccines, one can only speculate about the potential misuse of the data collected by his administration.
A clever remark shared on Twitter highlighted this stark contrast:
In 1840, the average human life expectancy was 35 years, and every single one of those people was vaccine-free and eating organic (RFK Jr is full of crap)
— Liam Nissan™ (@theliamnissan) June 3, 2026
By Amanda Seitz and Darius Tahir. Originally published at KFF Health News
U.S. health secretary Robert F. Kennedy Jr. is actively pursuing federal access to the medical records of the majority of Americans. This initiative aims to explore a link between vaccines and autism—a connection that the medical community has thoroughly studied and dismissed over the years.
The Department of Health and Human Services (HHS) is working to acquire data from relatively obscure state systems that facilitate the sharing of detailed, identifiable patient information among hospitals and clinics, as reported by KFF Health News.
During private discussions, several public health officials have raised concerns about granting Kennedy’s team access to such sensitive data, questioning its legality and usefulness. They worry about the implications of allowing the federal government to examine in-depth medical records, which could provide access to everything from physicians’ notes to prescription histories. HHS has yet to disclose how it plans to safeguard the personal health information it collects.
However, Kennedy insists that medical records are essential for investigating the causes of autism, assessing vaccine safety, and understanding chronic diseases. Moreover, significant funding has been directed toward a Nebraska-based nonprofit organization that supports Kennedy’s efforts, as evidenced by state records.
Frustrated by the limitations on federal access to Americans’ medical records, Kennedy stated, “We need a robust health record system. One of my primary surprises upon taking office was realizing how broken these systems are. We’ve had to collaborate with the states, and fortunately, we’ve received a lot of cooperation. Now we have databases ready for the studies we plan to conduct.”
Although HHS has not officially announced any new projects related to medical records and research on autism or vaccines, Kennedy faced criticism last year for suggesting the establishment of a federal disease registry comprised of medical records from individuals with autism—an initiative that was later disputed by health officials as not actually being in progress.
Yet, Kennedy asserted, “We have multiple studies lined up that will be executed over the coming year.”
The White House has refrained from endorsing further modifications to U.S. vaccine policy in anticipation of the vital midterm elections. Nevertheless, President Donald Trump has frequently echoed Kennedy’s skepticism regarding vaccine safety, even recently signing an executive order that calls for a reduction in the number of vaccines recommended for children.
Kennedy’s political appointees, including William “Reyn” Archer III, a former Texas health official and noted vaccine critic, have spearheaded the initiative to collect and analyze medical records for the health department.
Federal representatives have conducted multiple meetings with leaders of state-run health information exchange systems over the past year, inquiring how the personal medical records they maintain might be utilized for vaccine research, according to several individuals involved in the discussions or familiar with them.
Craig Behm, head of Maryland’s health information exchange, recounted that Kennedy’s team sought information on how their extensive medical records could be leveraged to study vaccine efficacy. “If this administration wants to conduct research on the effectiveness of vaccines, are you saying you can assist us in that research?” a top HHS official inquired, according to Behm.
Last June, Behm and leaders of other state exchanges convened with Kennedy’s senior advisers to explore the potential for sharing additional medical data with federal agencies. In October, these state organizations pitched a new surveillance system designed to provide HHS with “real-time, 24-hour data feeds on opioid and chronic disease trends” within a year, as detailed in a presentation reviewed by KFF Health News. If implemented, HHS could obtain data covering 90% of the population’s medical records by 2028.
During these meetings, administration officials often queried how the records could be employed to monitor vaccine safety, while Kennedy has dismissed the effectiveness of the federal government’s current vaccine-monitoring systems. Numerous studies have consistently shown that vaccinations are largely safe and effective for the general population.
“Vaccine safety, as you might phrase it, consistently surfaced in those discussions,” said John Kansky, CEO of the Indiana Health Information Exchange.
Kansky acknowledges the potential benefits of sharing information from health exchanges for public health purposes. Still, he expresses concern about the focus on vaccines: “It’s like, I wish you had chosen a topic that stirred less controversy.”
A System to Monitor Chronic Disease
Nearly every state possesses at least one health information exchange, typically regulated by state laws and operated by private companies or nonprofits. These systems facilitate immediate sharing of patient medical records between hospitals and health systems. Such platforms enable healthcare providers to quickly access medical histories within emergency rooms or share after-visit summaries with primary care physicians, among other purposes.
In specific scenarios—most often related to infectious disease outbreaks like measles or the flu—these exchanges inform public health authorities such as the state health department or the CDC. Employing these exchanges for more extensive public health initiatives is not a novel concept. However, it can lead to complications involving privacy, legality, and ethics, according to health officials.
Ultimately, Behm noted that his Maryland organization declined to provide additional data to the federal government for vaccine research. He emphasized that such a move would necessitate numerous approvals from hospitals, state political leaders, and research boards. Any new data-sharing arrangement must come with a clear, detailed framework outlining what data is shared and with whom.
“Many of us stated, ‘We cannot proceed beyond what our agreements permit us to do, so the answer is no,’” Behm explained. Indeed, most health information exchanges have contractual constraints that dictate who can access clinical data.
Kansky indicated that Indiana is still deliberating whether to grant additional data for Kennedy’s project, and no information has yet been shared.
HHS spokesperson Emily Hilliard did not respond to inquiries regarding how many states are participating in Kennedy’s initiative, what data is being collected, the financial investment by the federal government in this endeavor, how patient privacy is being protected, or who will have access to the data.
“HHS is enhancing 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 for monitoring the drivers of chronic illness.”
Kennedy has claimed, without substantiation, that vaccines can lead to chronic health issues.
A Kennedy Partner in Nebraska
At least one state has been receptive to these efforts.
The former head of Nebraska’s health information exchange has taken the lead in facilitating data sharing between medical records and the federal government.
Jaime Bland, the former CEO of CyncHealth—the Nebraska health information exchange utilized by the majority of hospitals and health systems in the state—reported that several states are exploring ways to “open up channels” for enhanced data analysis for Kennedy’s team.
“They are examining the data from new perspectives and providing insights back to the CDC,” Bland shared with KFF Health News.
Bland was part of a group that proposed CyncHealth would help launch this initiative, as outlined in a 43-slide PowerPoint presented during an October meeting with federal officials.
CyncHealth and other state health information exchanges would “ingest data from hospitals, clinics, laboratories, pharmacies, payers, and social service organizations,” then “link claims and clinical records through a master patient index.” One slide indicated that data from exchanges “will be deidentified where appropriate.”
As per the proposal, the federal government would compensate the exchanges for providing the records—$3 per individual annually.
Officials planned to make it clear publicly that this is not a new database but rather a federated trust model intended to provide real-time data to support all HHS initiatives, according to the presentation.
Following this meeting, Nebraska’s health department received a significant grant from the CDC, which subsequently funneled millions to CyncHealth.
On December 19, the CDC announced new funding through its Epidemiology and Laboratory Capacity program, which allocates funds to state and local health departments for laboratory work, health information improvements, and outbreak solutions.
Nebraska’s health department received $18.7 million—the highest among all states last year, despite Nebraska being the 38th most populous state. In contrast, Texas received $9.2 million, and California was allocated $10.8 million.
CyncHealth was later awarded three contracts totaling $13.6 million from the state health department in early January, according to a publicly accessible state contracts database.
Grace McNamara, a spokesperson for CyncHealth, noted that $2.4 million from the funding was reserved for Kennedy’s initiative, with the remainder distributed to “other participating states and various vendor organizations for implementation support.”
A former CDC official, who spoke to KFF Health News confidentially, confirmed that the funding was earmarked for CyncHealth to supply data for Kennedy’s project focused on vaccines and autism. McNamara clarified that the “work is aimed at enhancing outcomes related to both acute and chronic illnesses.”
“The referenced project is not research but a proof-of-concept initiative on how health information exchange and public health can collaborate to improve health outcomes and is not exclusively focused on autism,” she stated in an emailed response.
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—where she earned nearly $420,000 annually—in December and was appointed in April as chief data strategist for the MAHA Institute—a think tank established by allies of Kennedy and Trump aimed at promoting their Make America Healthy Again movement.
Bland aligns with Kennedy’s belief that data from state health information exchanges could yield deeper insights into autism’s causes or vaccine-related injuries.
“The data is incredibly fragmented within public and population health, which causes us to overlook individual cases,” Bland stated, recounting a story about a woman who experienced a seizure after receiving the HPV vaccine.
“The vaccine is indeed safe, without a doubt, but it may not have been safe for her,” Bland reflected. “As public health officials, we assert that the vaccine is safe, but certainly there are instances where it is not.”
Daniel Jernigan, a former senior official at the CDC who resigned last summer, stated that he endeavored to direct Kennedy toward valuable data sources that could aid in studying vaccine safety and autism.
After a 31-year career at the CDC that included oversight of public health surveillance and infectious diseases, Jernigan felt that a straightforward answer lay in working with researchers to obtain large, deidentified databases held by prominent electronic health record companies nationwide.
Jernigan noted that Kennedy did not seem interested in this approach. Instead, according to initial reports from The New York Times, Kennedy assigned two top advisors, Archer and Hannah Anderson, his former deputy chief of staff, to visit the CDC’s headquarters in Atlanta last July to directly download millions of identifiable records from the Vaccine Safety Datalink—a system used to investigate vaccine complications, although these records were several decades old.
Jernigan commented that the federal government possesses limited legal jurisdiction to access medical records from state health information exchanges. Furthermore, analyzing such records may not provide the insights Kennedy seeks regarding vaccines and autism.
“If they are solely relying on electronic health record data, the findings will be inherently limited,” Jernigan explained. “These records will only reflect what was documented during medical encounters and will likely be unsatisfactory in answering the questions at hand.”
KFF Health News data reporter Maia Rosenfeld contributed to this article.
