NIH R01 · 2025
When Steven Keating helped diagnose his own brain cancer from MRIs and health data in 2015, he became a resolute champion for patients’ access to their data. He didn’t survive to see implementation of the Cures Act in 2021, but his perspective remains relevant: “Why, as patients, are we the last in line for our own health data?” Patients who read their electronic medical notes (open notes) report better remembering next steps, more participation in shared decision-making, and enhanced self-management of chronic diseases. They are often the only connecting thread between various healthcare encounters, sometimes at different centers. As a result, they are uniquely poised to identify…
From the public funding record at NIH RePORTER. Describes the funded project, not the reviews below.