HHS Seeks State HIE Medical Records to Build New Public‑Health Data Platform
The department says the effort will modernize surveillance to study childhood chronic illness not vaccines or autism.
Overview
- Federal HHS officials have spent months meeting with leaders of state health information exchanges to explore how exchange-held electronic health records could support federal research and surveillance.
- Some states pushed back: Maryland refused requests to share identifiable records and Indiana is still weighing whether to provide additional data to the federal effort.
- Nebraska advanced a cooperation pathway after CyncHealth proposed linking clinical, claims and social‑service data and the CDC awarded the state a large Epidemiology and Laboratory Capacity grant that funded contracts with CyncHealth.
- HHS has framed the project as a modernization of public‑health surveillance for childhood chronic disease but has not disclosed which states participate, what specific data will be shared, who will access it, or the timeline and privacy safeguards.
- Experts and former CDC officials warn federal legal authority to obtain exchange data is limited and that electronic health record data alone has clear methodological limits for answering complex causal questions such as links between vaccines and autism.