May 7 (UPI) — The National Institutes of Health and Centers for Medicare and Medicaid Services said Wednesday Medicare and Medicaid private health data will be used for autism research.
According to the Health and Human Services Department, the data first will be used to research root causes of autism spectrum disorder.
The detailed private health data later would be used to research other chronic conditions.
HHS claimed the data use would be consistent with privacy laws to protect sensitive health information.
“We’re pulling back the curtain — with full transparency and accountability — to deliver the honest answers families have waited far too long to hear,” HHS Secretary Robert F. Kennedy Jr. said in a statement.
The sensitive health data includes medical records, claims data and even data from consumer wearable devices.
The partnership will start with establishment of a data use agreement focused on Medicare and Medicaid enrollees with an ASD diagnosis.
NIH Director Dr. Jay Bhattacharya said in a statement, “Linking CMS claims data with a secure real-world NIH data platform, fully compliant with privacy and security laws, will unlock landmark research into the complex factors that drive autism and chronic disease — ultimately delivering superior health outcomes to the Americans we serve.”
The research will focus on autism diagnosis trends, health outcomes from specific medical and behavioral treatments, access to care and the economic burden on healthcare systems and families.
A new registry will be created to track people with autism and the data collected will become part of the consolidated database.
At his Senate confirmation hearing, Bhattacharya said one of his main goals for NIH was to focus research on the chronic disease crisis in the United States.
According to HHS, autism now affects 1 in 31 U.S. children, with more than 25% of them experiencing profound or severe autism.
