RFK Jr outlines expansive vision for collecting US health data at Maha event

Robert F Kennedy Jr laid out an expansive vision for collecting, sharing and analyzing US health information at a Maha event hosted by a close ally and outspoken anti-vaccine activist.

Medical and lifestyle data, from doctor’s visits to exercise, should be connected and shared with the government and independent researchers, where it can be searched by AI – including potential links between vaccines and health outcomes including autism and mortality, suggested Kennedy, the secretary of the US Department of Health and Human Services (HHS) and a longtime vaccine skeptic.

“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,” Kennedy said at an event with the Maha Institute on Monday, with about two dozen people tuning into the live stream.

The Maha Institute is headed by Mark Gorton, who called himself “the boldest anti-vaxxer in the anti-vax conference” two weeks ago. The institute was co-founded by Tony Lyons, whose publishing house gave $4m to Kennedy through various Maha foundations with funding from political contributions and health-related corporations, according to reporting by the New York Times.

Kennedy has focused on pulling together data from all of the agencies he oversees, including the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC), and the Centers for Medicare and Medicaid Services (CMS).

”Your health information should follow you wherever you go,” Kennedy said. Providers, insurance and technology companies are creating apps for portable health records, for instance – making it easier for individuals to access their medical records, and also opening up the records for governmental and outside use.

“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. The Trump administration is now 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.

FDA monitoring systems can link claims data and electronic health records “to conduct active safety surveillance”, while commercial platforms, such as HealthVerity, can link insurance claims, prescriptions, laboratory results and electronic health records, he said.

State-level datasets reported to the CDC were “unusable” because they often collect different data points, Kennedy said: “Too many of those systems remain siloed and cannot give us the real-time information we need to understand health at scale.” Yet wider access to state health data could allow officials and others to connect immunization records, clinical data, laboratory results, pharmacy information and insurance claims “to create a more complete picture of a patient’s health over a long period of time”, Kennedy said.

Federal officials are using AI to process the data, he said: “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.”

Kennedy repeatedly touted the benefits of AI, which has been embraced by some in the anti-vaccine world for purportedly showing the dangers of vaccines. “It can help researchers find patterns across millions of health histories that human beings could never find by reading those records one at a time,” Kennedy said.

The OpenAI co-founder Sam Altman met with Kennedy this week and told him that HHS uses generative AI – Kennedy used the term “superintelligence” – more than any other federal agency, Kennedy said. OpenAI agents hacked US government websites and the Australian Medicare website this summer, reporting recently revealed.

“We’re already using all of these data to answer some of our most important questions,” Kennedy said. Officials have created an autism registry despite widespread protest . The Trump administration has also launched studies on the roles of such factors as diet, electromagnetic fields, screen time and vaccines in the development of illness, Kennedy said.

He repeatedly returned to vaccines. At the CDC, officials are using the Vaccine Safety Datalink (VSD) to compare outcomes in healthcare for vaccinated and unvaccinated people, as well as examining the role of aluminum adjuvants in vaccines; the timing of the hepatitis B vaccine in infancy; comparing live and attenuated vaccines; and studying influenza, Covid and HPV vaccines in children, Kennedy said.

Using Medicaid and “linked real-world data”, officials are also studying vaccination during pregnancy and subsequent childhood outcomes. FDA researchers are using the Biologics Effectiveness and Safety (Best) System and Medicare data to “replicate and expand previous studies” on vaccinated and unvaccinated populations, aluminum and asthma, and maternal influenza vaccines and autism spectrum disorder, he said.

“We will have answers soon,” Kennedy said. “A more connected health data system will make this research even stronger.”

Kennedy returned repeatedly to an old grievance – how independent citizens attempting to link vaccines to autism were blocked from accessing VSD data in the early 2000s after they violated confidentiality agreements. Mark and David Geier were not affiliated with any research institutions at the time of their suspension, and they created their own institutional review board to oversee their work, according to the Maryland state board of physicians, which suspended Mark Geier’s medical license. The board also charged David Geier with practicing medicine without a licence.

“I cannot get access to that data today. I cannot get access to it,” Kennedy said of the VSD data after 2002, which is safeguarded by healthcare organizations for health privacy reasons. “A qualified researcher with a legitimate hypothesis should not need permission from a gatekeeper to test it,” Kennedy said, calling the VSD an “unworkable system”. The Trump administration’s goal now was to make health data “research ready, and then give access to hundreds of external researchers to actually come in and look at it”, Kennedy said.

Gorton, the Maha Institute president, focused on open data in his comments at the event on Monday. But less than two weeks earlier, at a meeting of the anti-vaccine organization Children’s Health Defense, Gorton called vaccines a “public health nightmare”, spread misinformation about their ingredients, claimed that 40% of all kids are “injured” by vaccines because of allergy, asthma and eczema diagnoses, and railed against “the poisoners running the medical system”.

The success of vaccination, frequently called one of the greatest achievements in science, is a “complete fabrication” and “massive fraud”, Gorton said at the 17 September conference. He took particular aim at polio vaccines, claiming that an outbreak of polio in the 1950s was actually because of pesticides. “The supposed success of the polio vaccine was a massive medical fraud and a masterful PR deception,” Gorton claimed.

“The time has come to stop caveating every introduction with ‘I’m not an anti-vaxxer, but …’ Vaccines are a nightmare, and only anti-vaxxers can speak clearly enough,” Gorton said at that conference, adding: “More vaccines, more autism. It’s that simple.”

Focusing on opening up health data is new for the Maha Institute. But having greater access to US health information would help advocates make new links to the issues they have long focused on, Gorton said on Monday. Organizations including the Maha Institute, which exists outside the government but enjoys close ties to top leaders such as Kennedy, can “fill the gaps” and “bring political pressure”, he said.

Kennedy thanked Gorton, his longtime friend, for his “incredible support”.

本文の著作権はThe Guardianにあります。