In September 2012, I wrote about Italian data artist and TED Fellow Salvatore Iaconesi, who has been diagnosed with brain cancer [glioma, a tumor] and his call for submission of cures not only for the body, but also for the spirit and for personal transformation. Unlike the traditional medical records that patients themselves often have difficulty gaining access to, Iaconesi decided to crack his own files and create an open format that anyone who wants to read them can. He has posted his CT scans, MRIs, laboratory notes, and his diagnosis of glioma to a website, "La Cura," created by Iaconesi. His intention continues to be that we use these records in whatever way we want to as part of his vision to extend the definitions of healing, transmission of knowledge and medical information, community and humanity.
Since September, Iaconesi’s website has grown and there are hundreds of submissions ranging from recommended evidence-based and complementary treatments to unconventional video, poetry, art and music. Here is an update from Iaconesi sent as an email to those of us who sent along a “cure:"
Christmas and the end of the year have arrived, and "La Cura," our Open Source Cure, is still going on at full strength.
I am fine and progressing. And, most important of all, things are happening. Things which are about me, obviously, but also and more importantly about you all.
We have talked, and presented, and told the story. And discussed. A lot. All over the world. On newspapers, TV programs, websites, large and small. Hundreds of thousands of people have heard that there is a possibility.
To become human again. To escape the mechanisms in which we believe we're stuck into, and work together: among ourselves, with nature, science, culture, traditions and, most important of all, with our fellow human beings.
I want to thank each and everyone of you for this. Each testimony, contribution, suggestion, story, image, video, documentary, poem, performance, connection, contact, offer, advice has truly helped me. Both in the practice of fighting cancer, the unwanted passenger in my body, and to find the energy to enact this wonderful, worldwide performance of which we are all a part of.
We have the chance of doing something now which is relevant for the way our societies work. We can transform the meaning of the word "cure". We can transform the role of knowledge. We can be human.
I haven't had the chance to reply to each and everyone of you and we're still publishing all of your contributions.
It's still in early stage, so something might not fully work, but it allows anyone to share their medical data online, easily. And it's Open Source, meaning that you can grab the software, participate to its development, enhance it, or even use it for your own purposes (but if you do, please share any enhancements you make to the software back with the rest of the community).