The Open Patient: Advocating for Open Access to Medical Data

Rikki EndsleySteven 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.

 

The Open Patient: Advocating for open access to medical data was authored by Rikki Endsley and published in Opensource.com. It is being republished by Open Health News under the terms of the Creative Commons Attribution-ShareAlike 4.0 International License (CC BY-SA 4.0). The original copy of the article can be found here.