The National Institutes of Health is collecting private medical records from a variety of federal and commercial databases to support Health and Human Services Secretary Robert F. Kennedy Jr.’s new autism research initiative, the NIH’s top official announced Monday.
The new data will allow external researchers picked for Kennedy’s autism studies to study “comprehensive” patient data with “broad coverage” of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.
“The idea behind the platform is that existing data resources are frequently fragmented and difficult to obtain. The NIH will frequently pay multiple times for the same data resource. Even data resources within the federal government are difficult to obtain,” he stated during a presentation to the agency’s advisers.
Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers, and data from smartwatches and fitness trackers will all be linked together, he stated.
According to Bhattacharya, the NIH is currently in talks with the Centres for Medicare and Medicaid Services to broaden agreements governing data access. In addition, a new disease registry is being established to track Americans with autism, which will be integrated into the data set.
Between 10 and 20 outside groups of researchers will be given grant funding and access to the records in order to conduct Kennedy’s autism studies. Bhattacharya did not specify how they would be chosen, but said it would be “run through normal NIH processes.”
While the selected researchers will be able to view and study the private medical data, Bhattacharya stated that they will not be able to download it. He promised “state-of-the-art protections” to ensure confidentiality.
He stated that by consolidating the data, health agencies would have access to “real-time health monitoring” on Americans, allowing them to study other health issues as well.
“What we’re proposing is a transformative real- world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research,” he told me.
They are planning a “rapid timeline” to launch autism research using this data, he said, but did not specify when or how long the studies would last. Kennedy last week appeared to walk back his earlier prediction that they would have all the answers to autism’s causes by September.
“We will have some of the answers by September, but it’s going to be an evolving process,” he said, speaking with reporters.