The National Institutes of Health accumulates private medical records from many federal and commercial databases to provide new initiatives in the study of Robert F. Kennedy Jr., the Department of Health and Human Services Director. autismNIH’s top official said Monday.
The new data will allow outside researchers whose Kennedy’s autism study’s selection to study “comprehensive” patient data, including “wide coverage” of the US population, said NIH Director Dr. Jay Batacharya.
“The idea behind the platform is that it fragments existing data resources and is often difficult to retrieve. The NIH itself often pays multiple times for the same data resource. Even data resources within the federal government are difficult to retrieve,” he said in a presentation to the institution’s advisor.
He said there are medication records from drug records from the pharmacy chain, veteran issues and patients treated by the Indian Health Department, claims from private insurance companies, and genomics data from patients who claim that data from smartwatches and fitness trackers are all linked together.
The NIH is currently in discussions with the Centers for Medicare and Medicaid Services to expand its agreements to manage access to data, Bhattacharya said.
Additionally, new disease registrations will be launched to track Americans with autism and will be integrated into the data. Advocacy groups and experts called on Kennedy for describing autism as a “preventable disease.”
Researchers from 10-20 external groups will be given access to grant funding and records, resulting in Kennedy’s Autism Research. Bhattacharya did not provide details on how they are chosen, but said their choices are “performed through the usual NIH process.”
Bhattacharya said that backing back with data will be a “highest quality proposal” for the treatment and management of autism, from basic science to epidemiological approaches to other more applied approaches. He also acknowledged a wide variety of autism in how it affects people.
“Of course, we recognize that there are a variety of symptoms, ranging from autism, very functional children to very severely disabled people, and of course, research will explain that very carefully,” he said.
Selected researchers will be able to access and research private medical data, but Bhattacharya said they cannot download it. He has committed to “state-of-the-art protection” to protect confidentiality.
By bringing the data into one location, he said that health agencies can provide a window into “real-time health monitoring” for Americans to study other health issues.
“What we are proposing is a transformative real-world data initiative aimed at providing a robust and safe computational data platform for chronic disease and autism research,” he said.
They plan a “quick timeline” to launch Autism Research Using this data, he said, but did not provide details on when the study would begin or how long it would take. Kennedy appeared to be returning his previous predictions last week that he has all the answers to the causes of autism. By September.
Bhatacharya talks with reporters on Tuesday I pushed back the timelinethey say they now hope to have a grant to get out the door by September for research.
“It’s hard to guarantee when science will advance. It depends on what nature says,” Bhatacharya said.
more
