Under Secretary Robert F. Kennedy Jr., the Department of Health and Human Services (HHS) has announced new initiatives aimed at ostensibly “understanding autism” and other chronic diseases. Operating in collaboration with the National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services (CMS), the effort “builds a real-world data platform that enables advanced research into billing data, electronic medical records and consumer wear.”
However, while the stated purpose is to improve family scientific understanding and outcomes, this initiative presents an important step in centralizing the enormous overpowerment of American medical and behavioral data. What HHS is building looks like more than a research tool. This is a large federal system that stores and analyzes the most sensitive personal information on a scale you've never seen before, and can be weaponized in a way that no one is ready to face.
Platform
The platform, released in April, will integrate streams of health records into what NIH Director Dr. Jay Bhattacharya described as a secure data archive available to researchers. At the time, he explained that the goal was to overcome duplication and inefficiency.
The idea behind the platform is that it fragments existing data resources and is often difficult to retrieve. NIH itself often pays multiple times for the same data resource.
Now, Secretary Kennedy is moving further, touting the possibility of identifying the root causes of autism “with full transparency and accountability.”
However, that transparency seems to halt just before the public. And what the federal government is building could have results far beyond medical research.
Billing data: granular and government owned
Medicare and Medicaid are making data one of the central pillars of the new HHS platform. These records document the steps taken, the relevant providers, and the location and date of the services.
Medicare processes over 1 billion service charges each year. These span services are approximately 66 million Americans, mostly seniors. Medicaid, which covers over 71 million low-income people and families, generates a large amount of claims as well.
Each claim tells a story. This includes patient age, gender, race, diagnostic code, procedure code, provider details, service date, and billing amount. Together, these records form a full-body ledger of time stamps of a person's medical life.
Federal officials suggest that these claims will be identified in full compliance with the “Privacy and Security Act.” However, this rich data is not necessarily anonymous, especially when combined with other sources. The concern isn't just who will relink the data. That's about precedents being set.
Electronic Health Records: From local to federal
The platform also incorporates an Electronic Health Record (EHR). According to government sources, EHR is a real-time, patient-centered record. They create information “where you need it, anytime, anywhere.” They bring everything about patient health into one place.
In reality, it means diagnosis, test results, drugs, allergies, vaccinations, treatment plans, and provider notes – stored in a single digital file. And what once stayed in the doctor's office now enters the central federal system.
The EHR was designed to improve care and coordination. But with the wrong move, the details will be complete medical documents. Combined with other datasets, it draws an almost complete picture of a person's physical and mental health.
Wearables and real-time monitoring
Including wearable data raises new concerns about the boundaries of HHS investigations. Consumer devices such as fitness trackers and smartwatches can collect sleep cycles, exercise patterns, heart rate and, in some cases, audio data.
Unlike claims and EHRs, this data is continuous, behaviorally rich and is often collected without clinical context. In the hands of researchers, it may help track developmental trends. At the hands of centralized authorities, it becomes a tool for behavioral modeling, population-level surveillance, or potentially bad political misuse.
Dr. Bhattacharya previously confirmed that the platform incorporates “private sources” along with Medicare and Medicaid data. Although he did not detail how to access wearable data, access to wearable data could involve partnering with companies such as Fitbit, Apple, and Garmin through Grant programs, pilot research, or data sharing agreements. Participants in such studies often agree to share biometric data, but may not fully understand how much they are handing over.
For example, NIH's “All Us” program has already partnered with Fitbit to collect wearable health data from research volunteers.
Now, the federal government claims this is just a research project. However, centralization rarely reduces the data infrastructure. It will enlarge.
Add-ons: Genomics and Lab Results
In addition to these sources, the new data platform will include results and genomic data from the Department of Veteran Affairs (VA) and Indian Health Services lab, according to a previous statement by Dr. Bhattacharya.
This type of data is persistent, not merely predictive. DNA cannot be changed, revoked, or easily anonymized.
It raises obvious privacy concerns. But the deeper question is one of governance. Should the federal government allow the genetic profile of Americans to be potentially preserved and used for a potentially eternally – for the sake of their own? And what limitations remain if the answer is “those that help science”?
There are other ways
The Constitution never imagined HHS – not to mention the real-time federal archives of the most private health indicators of Americans. Public health was meant to be local – accountability, restrained and consent-based.
The United States does not need a federal data hub to study autism and other conditions. Some states, such as Pennsylvania, already have surveillance programs at universities and children's hospitals. These efforts collect meaningful data, follow ethical rules, and reflect the communities they serve.
The family opts in. Researchers respond to local boards. The process respects choices.
Furthermore, the medical literature behind the most obvious causes of autism, such as childhood vaccines, is already vast. It also expands and deepens without injecting millions into federal digital systems.
If HHS really wanted the answer, it supports the legal and the ones that already work. Instead, they are building a national platform with no clear restrictions, no local control, or no obvious ways.
Surveillance risks
The HHS Autism Platform is more than just a research tool. This is a change in how health information is governed, accessed and controlled. It is difficult to relax when infrastructure exists to store and analyze the total health histories of millions of Americans – if not impossible –
This is not a guess. This is a documented pattern across sectors. Additionally, it uncovers the administration's broader efforts and risks to integrate federal digital systems that link health, financial and social records.
Understanding autism and other chronic diseases is a noble goal to plague America. However, by centralizing genome, behavior, and clinical data under federal authorities, there is the risk of doing so creating attractive surveillance tools for control, profiling, or political abuse.
