New documentary offers personal stories about the importance of access to medical data
The Open Patient: Advocating for open access to medical data
Steven Keating had always been interested in data and learning about things, which is why he volunteered to do a research scan when he was a student. The scan revealed an abnormality. In 2014, the abnormality had grown into a massive tumor. Soon he learned that there were many barriers keeping him from accessing his own data. "And that's what I've been sharing, which is this question: How come as a patient we're last in line for our own data? How come my doctors and my university researchers can see my tumor genome and I can't?"
"There is no one, open, electronic medical record system that everyone knows," explains Liz Salmi, a blogger and patient advocate. In The Open Patient: Healing through sharing, a powerful new documentary from Red Hat Videos, Steven and Liz share their personal stories about advocating for open medical data that's available in an easy-to-digest format patients can access to make proper decisions.