STAT+: RFK Jr. wants Americans’ health records to study autism. It’s not that easy to get them
Federal health officials want to collect individuals' health data so they can answer questions about autism and chronic diseases. The idea is not novel.
As health secretary Robert F. Kennedy Jr. prepares to investigate vaccine complication rates, chronic diseases, and autism, real patients’ health records have emerged as a coveted resource.
Food and Drug Administration commissioner Marty Makary said in an interview with Megyn Kelly that “massive electronic health record data” could be used to monitor for vaccine injury. National Institutes of Health director Jay Bhattacharya announced the research agency would build a “transformative real-world data initiative” pulling in many streams of data, including private EHRs, to study autism and chronic disease. On Wednesday, the NIH said it would start that work by linking claims data from the Centers for Medicare and Medicaid Services.
This isn’t a new idea: Real-world data researchers and health data companies have been building similar platforms for years, often focusing on a single disease at a time. The NIH’s recent history is littered with efforts to build banks of health records and link them with other data in an effort to supercharge medical research.
