“I have a brain cancer.”
Data artist and TED Fellow Salvatore Iaconesi posted these words this morning, along with a video of himself speaking. With his long ponytail reduced to a scruffy mohawk, he shares this story:
Yesterday I went to get my digital medical records: I have to show them to many doctors.
Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life.
I cracked them.
I opened them and converted the contents into open formats, so that I could share them with everyone.
Read the full manifesto after the jump.
See Salvatore’s website to download everything in his medical files — his CT scans (labeled in Italian “TAC”), MRIs (labeled “R.M. 1” and “R.M. 2”), lab notes and his medical records and diagnosis of his glioma — and take a look. The images above are two TAC or CT scans.
In cracking his medical files and opening them to the world, what’s he hoping for? An open-source cure. And he means a cure of any kind:
There are cures for the body, for spirit, for communication.
Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem.
Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE.
See the website to download his CT scans, MRIs and notes — and do what you will.
Salvatore Iaconesi’s manifesto from http://artisopensource.net/cure/
Rome, September 10th 2012
I have a brain cancer.
Yesterday I went to get my digital medical records: I have to show them to many doctors.
Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life.
I cracked them.
I opened them and converted the contents into open formats, so that I could share them with everyone.
Just today I have been able to share the data about my health condition (about my brain cancer) with 3 doctors.
2 of them already replied.
I have been able to do it because the data used open, accessible formats: they have been able to open the files using their computers, their tablets. They have been able to reply from home, on sunday.
I will progressively publish all the replies I will receive, using open formats, so that anyone with my same disease will be able to benefit from the solutions I will find.
This is a CURE. This is my OPEN SOURCE CURE.
This is an open invitation to take part in the CURE.
CURE, in different cultures, means different things.
There are cures for the body, for spirit, for communication.
Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem.
Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE.
Create your CURE using the content which you find in theDATI/DATA section here on this site, and send it to info@artisopensource.net.
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