Salvatore Iaconesi is an engineer, artist, hacker and 2012 TED fellow who teaches interaction and digital design at Sapienza University of Rome, Italy. He hacked his medical records to put them online in a global search for the best treatments.
Alison George: You were told you had brain cancer, and your response was to hack open your medical records and publish them online. Why?
Salvatore Iaconesi: 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 tumor, 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.
AG: Last month you put this data on your website artisopensource.net/cure. What happened?
SI: 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.
AG: Scans of your brain have inspired you and other artists in many ways. Tell me more.
SI: There are lots of things going on: poems, texts, narratives. An electronic music collective in Palermo, Italy, did a performance with images of my cancer as their visuals. There is this wonderful American artist, Patrick Lichty, who built a sculpture of my brain and tumor in Second Life. I have printed out a picture of my tumor, and I look at it and speak to it. It’s like a meditation with your cancer, so you are not that afraid anymore. Science talks about the fact that laughing, being unafraid, being positive, being social, is good for your immune system, your psychology.
AG: Does crowdsourcing a cure mean you’ve lost faith in medicine?
SI: No, it doesn’t. I want to take care of myself using medicine and surgery. Doctors are wonderful people. But I also want to take into consideration all other possible approaches. When I disclosed my records, I made it explicit that I was doing it to try to find a new definition for being sick, or ill or diseased, and also for the word “cure.” In different cultures, cure means different things. It could refer to the body or the soul or to society.
AG: Don’t doctors advise against trawling the Internet for information about diseases?
SI: We live in a time when, thanks to the Internet, the mythology has been destroyed that people are stupid and some things can be done only by professionals. If you are open, you can have some interesting surprises. Of course your doctor will say don’t go to the Internet because magicians and clowns will show up selling you miracle remedies which don’t work. I’m not replying to those emails—that’s very important.
AG: The Italian parliament might change the law to make medical information more open.
SI: It has been proposed and I am very happy about it.
See more in New Scientist’s gallery: “Healing arts riff on open-source medical records.”
This article originally appeared in New Scientist.