In an effort to expand the agreements that control access to their data, the NIH is also in discussions with the Centers for Medicare and Medicaid Services.
Ten or twenty outside organizations selected “through normal NIH processes” will make up the researchers examining the information, according to Bhattacharya.
Bhattacharya said that while the teams would have access to the sensitive medical data, they will not be able to download it and that “state of the art protections” will be in place to ensure confidentiality.
In addition to the data research, the NIH will start tracking Americans with autism via a new illness registry. This portal into “real-time health monitoring,” according to Bhattacharya, was intended.
To provide “a robust and secure computational data platform for chronic disease and autism research.” However, the concept has drawn criticism from advocates for those with autism.
