The National Institutes of Health (NIH) collects private medical records of many Americans from several different federal and commercial databases to give researchers for researchers from the American Secretary of Health, Robert F Kennedy Jr, the new study of autism.
This information being included in the database, the NIH would also have made a new register to follow people with autism, according to CBS News.
The health agency says it was doing it to keep a controversial promise that the Secretary of Health made to eliminate the cause of autism by September, despite certain experts by saying that Kennedy’s objective is not even achievable.
“If you ask me, as a scientist, is it possible to get the answer so quickly? I see no way possible,” said Dr. Peter Marks on the face of CBS The Nation earlier this month.
On data collection, the director of NIH, Jay Bhattacharya, told the advisers during a presentation on Monday that the objective was to help researchers study autism by giving them access to the “complete” data of patients and health files.
He added that these files would cover a “wide range” of people in the United States.
“The idea of the platform is that existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay several times for the same data resource,” he said in the presentation. “Even the data resources in the federal government are difficult to obtain.”
Bhattacharya added that the NIH also discussed a potential expansion of the agency’s access to the centers for Medicare and Medicaid services.
The study also plans to link the recordings of pharmacies, laboratory tests and the genomic data of patients treated by the Ministry of Affairs Veterans and Indian Health Service, claims for private insurers and data from smart watches and fitness trackers.
Between 10 and 20, external research teams will be selected and granted to subsidies to study the data, according to CBS News.
Bhattacharya said that the compilation of this data could also give health agencies a window on “real-time health surveillance” on Americans to study other health problems beyond autism.
“What we propose is an initiative of data in the real world, which aims to provide a robust and secure computer data platform for research on chronic diseases and autism,” he said.
Bhattacharya echoes Kennedy’s words according to which certain answers on the cause of autism would be discovered by September, but he added that the study would be “an evolving process”.
The news followed Kennedy’s first press conference in which he said that a significant and recent increase in autism diagnoses was proof of an “epidemic” caused by an “environmental toxin” despite the evidence collected by healthy researchers.
The Guardian contacted the NIH to comment.
