Health Secretary Robert F. Kennedy Jr. says Americans should control their own medical records while researchers gain greater ability to analyze health data across federal and private systems to investigate potential contributors to chronic disease.
By yourNEWS Media Newsroom
Health Secretary Robert F. Kennedy Jr. called for a major expansion in the use and accessibility of American health data, arguing that connecting fragmented medical information could help researchers investigate why chronic diseases have become so prevalent across the United States.
Speaking Monday at the MAHA Open Data Summit in Washington, Kennedy outlined a two-part goal: give individuals greater control over their own health information while making large health datasets more useful to physicians, scientists and researchers studying disease.
The Sept. 28 event, organized by the MAHA Institute, focused on building what organizers described as a national health-data architecture capable of improving patient access and supporting research into chronic illness.
Kennedy said Americans should be able to access their health records through their phones and easily share the information with physicians, applications and artificial intelligence systems when they choose.
“Second, we need to put American health data to work to answer the most important question that is in front of us today, [which] is: why are Americans so sick?” Kennedy said.
“We need to use America’s health data to determine whether the food we eat, the chemicals we encounter, the vaccines that we’re administered, the other environmental and lifestyle exposures are contributing in one way or another to the chronic disease epidemic. The same data that gives Americans control over their health can help us understand the health for 340 million Americans.”
Kennedy’s remarks reflect one of the central priorities of his Make America Healthy Again agenda: identifying possible causes of chronic disease by examining environmental, dietary, medical and lifestyle exposures rather than concentrating only on treating diseases after they develop.
HHS has publicly described identifying the underlying causes of chronic illness as a central MAHA objective.
Health data by itself cannot establish that a particular food, chemical, vaccine or other exposure causes a disease. Large datasets can reveal associations and generate hypotheses, but determining causation generally requires additional epidemiological analysis, careful control for confounding factors and, where feasible and ethical, other forms of scientific evidence.
Kennedy said the current system makes that work more difficult because enormous quantities of medical information are scattered among hospitals, insurance companies, government agencies, laboratories and other organizations that often use separate technical systems.
Laboratory results, prescriptions, diagnoses, claims data and other health information are generated continuously, he said, but much of it remains locked in separate databases that do not easily communicate with one another.
Kennedy said HHS — which includes agencies such as the Food and Drug Administration, National Institutes of Health and Centers for Medicare & Medicaid Services — is working to connect health-information systems and make data more useful to both patients and researchers.
MAHA Institute President Mark Gorton made a similar argument before Kennedy’s remarks, saying fragmented health records can create difficulties for patients attempting to obtain their own information, physicians trying to understand a patient’s history and federal officials monitoring drug performance or population health.
The summit’s stated focus was on expanding access to health information while developing infrastructure that could support research using records from federal agencies, healthcare providers and other sources.
Kennedy said better information could support prevention at several levels.
Patients could use their records to make decisions about their health, physicians could use more complete information to identify risks, and researchers could analyze much larger populations in an effort to identify patterns associated with chronic illnesses such as diabetes.
The administration has already begun pursuing that approach in autism research.
In 2025, NIH and CMS announced a partnership using selected Medicare and Medicaid information to create a real-world data platform for autism research. The project was designed to connect claims information with electronic medical records and potentially consumer wearable data while operating under federal privacy and security requirements.
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” Kennedy said when that effort was announced.
The project initially focused on autism diagnosis trends, health outcomes from medical and behavioral interventions, access to care and the economic burden of the condition.
Researchers have not established a single cause of autism. Evidence indicates that autism spectrum disorder is associated with complex genetic and developmental factors, and large-scale data analysis can be used to investigate additional potential influences without assuming beforehand that any particular exposure is causal.
Kennedy has also repeatedly promoted wearable technology as a potential source of real-time health information.
Devices such as fitness trackers and smartwatches can collect continuous information on movement, sleep, heart rate and other measurements that historically were available only intermittently during medical appointments.
Federal regulators have also clarified how they intend to oversee some of those products.
In January, the FDA updated guidance concerning low-risk general-wellness technologies and certain clinical decision-support software. The agency does not regulate all wearables or AI applications as medical devices; whether a product falls under FDA oversight depends largely on what the product is intended to do and whether it is used in diagnosing, preventing or treating disease.
That distinction means a consumer device used to encourage exercise or track general wellness may face different regulation from software or hardware making medical diagnoses or treatment recommendations.
Kennedy’s broader vision would incorporate information from multiple sources rather than rely on any single technology.
Medical claims, laboratory tests, electronic health records, prescriptions and wearable-device information could potentially provide researchers with a much more detailed picture of health over time if the datasets can be linked accurately and securely.
The scale of those datasets could also allow researchers to investigate comparatively uncommon outcomes that smaller studies might not detect.
At the same time, expanding access to interconnected health data raises substantial questions involving privacy, informed consent, cybersecurity and who should be permitted to use sensitive medical information.
The NIH-CMS autism initiative, for example, states that linked information is to be handled through secure systems consistent with applicable privacy laws.
Kennedy emphasized that patients should have greater control over their information rather than lose control as databases become more interconnected.
His argument is that the same technological infrastructure can serve both purposes: allowing patients to retrieve and share their own records while permitting appropriately protected population-level data to be studied for public-health research.
The approach also reflects a growing role for artificial intelligence in medicine.
AI systems can analyze very large datasets much more rapidly than traditional manual methods and can identify patterns across laboratory results, diagnoses, medications and other variables.
Those patterns still require scientific validation. An algorithm finding that two factors frequently occur together does not demonstrate that one caused the other, and inaccurate or incomplete underlying data can produce misleading results.
FDA itself notes that AI-enabled medical technology requires attention throughout its lifecycle, including validation, monitoring and continued assessment of safety and effectiveness.
For Kennedy, however, modernizing access to health information is a prerequisite to answering the questions he wants HHS researchers to pursue.
He has argued that preventing disease requires better knowledge about when illness develops, which exposures precede it and how different populations respond to medical, environmental and lifestyle factors.
The MAHA Open Data Summit placed that argument at the center of the administration’s chronic-disease strategy.
Rather than allowing billions of medical records and data points to remain isolated in separate government, hospital and insurance systems, Kennedy wants them made more interoperable — while simultaneously giving patients easier access to their own records.
His stated objective is ultimately investigative: use the enormous volume of health information Americans already generate to determine which factors are associated with disease and then subject those findings to further scientific study.
“Why are Americans so sick?” Kennedy asked.
His answer Monday was not a particular food, chemical, vaccine or lifestyle factor. It was that the government needs a better health-data system capable of testing those questions on a scale large enough to produce more reliable answers.
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