The National Institutes of Health is collecting the private medical records of many Americans from federal and commercial databases for use in Health and Human Services Secretary Robert F. Kennedy Jr.'s autism research.
NIH Director Dr. Jay Bhattacharya said Monday that the new data sets will provide researchers with "comprehensive" patient data and "broad coverage" of the U.S. population for the first time, CBS News reported.
"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain," Bhattacharya reportedly told NIH advisers during a presentation. "The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain."
Pharmacy medication records, lab test results, and genomics data from patients seen by the Department of Veterans Affairs and Indian Health Service will be linked to private insurer claims and data from electronic devices like fitness trackers and smartwatches, he said.
Bhattacharya also said that the NIH is in discussions with the Centers for Medicare and Medicaid Services to increase access to their data through expanded agreements. Additionally, a new disease registry to track Americans with autism is being launched, which will be merged with the data.
Ten to 20 external groups of researchers will reportedly be awarded grant funding and access to the medical records to conduct Kennedy's research on autism. Bhattacharya said the selection of the groups will be "run through normal NIH processes" but did not elaborate.
The data will be used to conduct "the highest quality" research proposals, Bhattacharya said, ranging from "basic science to epidemiological approaches, to other more applied approaches" for the treatment and management of autism.
"I recognize, of course, that autism, there's a range of manifestations ranging from highly functioning children to children that are quite severely disabled," he said. "And, of course, the research will account very carefully for that."
Addressing privacy concerns, Bhattacharya said the research teams will be able to access and study the medical data, but will not be able to download it, and he promised "state of the art protections" to ensure patient confidentiality.
Health agencies could carry out "real-time health monitoring" on Americans with all the data in one place, he said, also allowing them to study other health problems.
"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," Bhattacharya said.