By Alison George
You were told you had brain cancer and your response was to hack open your medical records and publish them online. Why?
When I was diagnosed I was a bit unsatisfied with what took place at the hospital: it was almost as if I had nothing to do with it. The doctor comes up, he tells you that you have a tumour, and it’s like you disappear and only your clinical records remain. I didn’t want to disappear. I’m not just a patient, I am a human being. I stepped out of the hospital with a copy of my digital medical records, but I found they were in a peculiar format which takes a lot of skill to open. So I hacked this format to make that data really accessible.
Last month you put this data on your website. What happened?
It’s been incredible. I have been able to become an expert in neurosurgery and neurology. Through this kind of complete openness, I could access thousands of people who have provided me with their knowledge, their skills, their testimonies, their life experiences. Roughly 60 neurologists, neurosurgeons and radiologists contacted me suggesting techniques for surgery and for treatment. They are even talking to each other.