The U.S. Department of Health and Human Services has announced plans to create a real-world data platform utilizing Medicare and Medicaid records to explore the root causes of autism. This effort comes after previous confusion about launching an autism registry. The new partnership with the NIH allows researchers access to data from a significant portion of the population. However, this plan raises concerns amongst disability advocates regarding privacy and the safeguarding of sensitive health information, especially since the CMS data contains personally identifiable information.
"We're using this partnership to uncover the root causes of autism and other chronic diseases," HHS Secretary Robert F. Kennedy Jr. said, raising concerns about data privacy.
"CMS data includes certain information about individuals - age/date of birth, sex, where they live. It is possible to identify a person based on knowledge about these characteristics," warned Helen Tager-Flusberg.
Collection
[
|
...
]