At a Make America Healthy Again Institute event, Robert F. Kennedy Jr. called for aggregating patient data from health information exchanges, electronic health records, labs, Medicare, Medicaid, and commercial platforms. He argued that current user agreements give institutions control over who can study health data, creating protectionism and politicizing science.
The event highlighted Nebraska's partnership with federal agencies as a model. MAHA Institute President Mark Gorton said the collaboration has produced data for chronic disease research and serves as a proof of concept. However, the partnerships were not publicly announced, and other state exchanges have declined to share data.
Privacy and legal issues loom. Arizona's health information exchange data cannot be used, even de-identified, for research grants without individual consent. Experts say the main barriers are data governance, ownership, and privacy, not technical limitations. Gorton acknowledged that expanding the model requires states to invest in data governance.