Overview

• The Department of Health and Human Services (HHS) has initiated a pilot program to share de-identified Medicare and Medicaid data with the National Institutes of Health (NIH) to research autism and chronic diseases.
• The program aims to uncover autism's root causes by September, focusing on diagnoses, intervention outcomes, disparities, and economic impacts.
• HHS emphasized that privacy protocols will be followed, using de-identified data and secure mechanisms for data exchange, but advocacy groups and experts have expressed concerns over privacy and feasibility.
• Officials, including NIH Director Jay Bhattacharya, stress that the program represents a significant step in interagency collaboration to leverage real-world data for public health research.
• Plans are in place to expand the database to include data on other chronic illnesses and their economic burdens, though questions remain about the program's scalability and timeline.