Leadership1 publisher3 min readPublished
Kennedy wants AI to search Americans' linked health records, including for vaccine outcomes
HHS chief Robert F Kennedy Jr wants health data linked and AI-searchable to study vaccines and chronic disease, citing Medicaid's tens of millions of children. For private holders of health data, the routes he described run through patient apps, commercial linkers and state reporting.
The Board Room · Leadership desk
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What happened
- Kennedy has concentrated on pulling together data from the agencies he oversees, including the FDA, the CDC and the Centers for Medicare and Medicaid Services.
- At the CDC, officials are using the Vaccine Safety Datalink to compare healthcare outcomes for vaccinated and unvaccinated people.
- Kennedy said state datasets reported to the CDC are unusable because they often collect different data points.
- The event's host, the Maha Institute, is run by Mark Gorton, who two weeks earlier called himself "the boldest anti-vaxxer in the anti-vax conference".
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Why it matters
- exposure Portable-record apps built by providers, insurers and tech firms give records a path from the patient to government and outside researchers, so every app partnership now raises a government-use question for the data holder.
- constraint If states standardise and widen what they collect to fix their CDC feeds, the added reporting falls on whoever supplies state systems with immunization, lab and pharmacy data.
- exposure Records pooled for federal AI analysis depend on the security of tools HHS picks, and the hospitals and insurers that supplied those records have no part in that choice.
- precedent Tracking exposures and interventions in Medicaid claims turns enrollment in a public insurance program into a standing research cohort for exposure studies.
The board-deck version of this speech is that HHS wants everyone's health data, but most of the sources Kennedy named are ones his department already runs [6]. The administration is tracking "exposures", interventions and claim data in Medicaid, and "Medicare gives us enormous amounts of information on older Americans and people with disabilities," he said [10]. "Medicaid is a really useful vehicle for studying that because there are hundreds of millions of lives in there, including tens of millions of children who've been in that program for 10 or 20 years," Kennedy said [9]. FDA monitoring systems can link claims data and electronic health records "to conduct active safety surveillance", he said [11].
The Guardian's account does not describe a rule that would require private providers or insurers to hand records over. The routes to private data are indirect. "Your health information should follow you wherever you go," Kennedy said [7]. Providers, insurers and technology companies are building apps for portable health records. According to the Guardian, those apps make records easier for patients to reach and also open them to governmental and outside use [8]. Commercial platforms such as HealthVerity can link insurance claims, prescriptions, laboratory results and electronic health records, Kennedy said [12].
States are the third route. Kennedy said wider access to state health data could connect immunization records, clinical data, laboratory results, pharmacy information and insurance claims [15]. The aim, he said, is "to create a more complete picture of a patient's health over a long period of time" [15]. "Too many of those systems remain siloed and cannot give us the real-time information we need to understand health at scale," he said [14].
Kennedy framed the project around chronic disease. "We need to use America's health data to determine whether the food we eat, the chemicals we encounter, the vaccines that we're administering, the other environmental and lifestyle exposures are contributing in one way or another to the chronic disease epidemic," he said [2]. He offered speed as the return. "Studies that used to take years, you can do them literally in seconds. You can ask questions and you can get immediate answers, and that's what we're doing today," he said [16]. In my view, the trade-off for an organisation whose records reach these pools is plain: it supplies the inputs to questions it did not choose.
The institute that hosted him was co-founded by Tony Lyons, whose publishing house gave Kennedy $4m through Maha foundations, according to New York Times reporting cited by the Guardian [5]. About two dozen people watched the livestream [3].
The query layer is a separate exposure. Kennedy said Sam Altman, OpenAI's co-founder, met him this week and told him HHS uses generative AI more than any other federal agency [17]. OpenAI agents hacked US government websites and the Australian Medicare website this summer, according to recent reporting cited by the Guardian [18].
The speech set out intentions. Over a longer horizon, the department has shown it will proceed against objection: officials created an autism registry despite widespread protest [19], and the administration has launched studies on the roles of diet, electromagnetic fields, screen time and vaccines in illness [20]. The secretary directing that work is, in the Guardian's description, a longtime vaccine skeptic who wants possible links between vaccines and autism and mortality searched by AI [1]. A data-sharing agreement signed this quarter decides whether an organisation's records are already in the pool when those studies report.
What to watch
- An HHS or CMS rule, grant condition or data-use agreement that requires providers, insurers or states to share records for these studies.
- Results from the CDC's Vaccine Safety Datalink comparison of vaccinated and unvaccinated people, and which datasets fed it.
- Whether HHS signs contracts with commercial linkers such as HealthVerity for the vaccine and autism work.