The National Institutes of Health (NIH) is collating personal medical records gathered by various federal and commercial entities to underpin a new initiative on autism research spearheaded by Health and Human Services Secretary Robert F. Kennedy Jr., NIH Director Dr. Jay Bhattacharya announced Monday.
This unprecedented dataset will provide outside researchers chosen for Kennedy’s research with the capability to examine “comprehensive” patient data with “broad coverage” of the U.S. population.
The data will incorporate pharmacy medication histories, genomic and lab test results from the Department of Veterans Affairs and Indian Health Service, insurance claims data, and health measures via smartwatches and fitness trackers.
The NIH is also in the process of negotiating additional data-access arrangements with the Centers for Medicare and Medicaid Services. A new national autism registry will also be established and integrated with the project.
Despite criticism by advocates over the characterization of autism by Kennedy as a “preventable disease,” the NIH will award 10 to 20 outside research teams under a standard peer-reviewed grant competition.
The researchers will delve into a broad spectrum of autism-related issues, ranging from basic science to applications and epidemiology.
While researchers will have access to the massive repository of healthcare data, they will not be able to download the data. Bhattacharya stressed that “state-of-the-art protections” to maintain patient privacy will be employed.
He added that consolidating the data could give health agencies real-time intelligence about general public health patterns. The initial aim was to determine by September the causes of autism, but Kennedy has since changed that deadline.
Instead, NIH now plans to issue research grants by September with no deadline to finish the studies.