Salvatore Iaconesi discovered to have a cancer when he retired his clinical records 10 days ago. He needed to show the results to many doctors. Thus he decided to crack the digital proprietary format, open it, and share it with the entire world to start his personal treatment, his open source Cure. “This is a CURE. This is my OPEN SOURCE CURE.” says Salvatore in his specific portal http://www.artisopensource.net/cure/ where we invite you to read his open call.
The political and poetical sign by Salvatore created a wide echo both in Italy and in the international landscape of the several networks in which the italian artist and complexity hacker is active and well known since years.
Following the last updates from Salvatore’s Cure. About openness…
“[...] we have some updates about the DICOM format which was used to store my clinical data.
In practice, the files I received were encoded in ways that were a bit peculiar (we are about to publish a tutorial about it) so that I was pushed to hack them to convert them to other open, more easily manageable formats.
As a matter of fact I had several difficulties in using this format, and I am not exactly a newbie. I had a hard time opening the format, distributing it and “doing something with it”.
The situation of less tech-savy persons having to deal with this format obviously comes to mind. From what I can imagine, this kind of people would have placed the CD in an envelope and (snail)mailed it.
So, this could be a great time to discuss together the concept of “open”, which, luckily, is starting to mean “standard”, “shared” bu also “accessible, as “Open Data” should be: you go to a link, you download them, you do what you need/want.
We are daily witnesses of the enormous benefits coming from the fact that open data are used creatively, maybe even in ways which were not imagined in the beginning. Innovation is in science, in research but also in the creativity of those people who decide to act across domains, defining new territories.
There is a lot of hope there.
And this brings me to a second consideration.
The data formats which I was “forced” to hack is in a peculiar state of harmony with the common definition of “disease/illness”.
The definition of “diseases” is “reserved” to doctors. Often using words which we don’t understand and, most important of all, touching only a part of the human condition, which is made from body, but also of spirit and sociality.
The DICOM format is open, yes, but in a very “peculiar” condition of openness: it is like the openness of the words which they use to tell you about your health condition, and with which they descrive and actuate their version of the “cure”: you can’t understand it, you can’t reuse it, you can’t combine it with other possibilities. It is thought for “experts” and “professionals” (of one single type), leaving little space for other possibilites for expression and socialization.
If you feel like it, I urge you to read the book“Un altro Giro di Giostra” by Tiziano Terzani who, in his round of waltz with cancer has expressed many, beautiful suggestions about the possible evolution of terms such as “disease”, “cure” and “health”.
Or think about Franco Basaglia and to the redefinition of the condition of “mental illness” and to the philosophical, spiritual and social meaning that comes with it, taking the “mentally ill” back to life, to society.
Think about both as they could be applied to our current condition, to the possibility of reclaiming forms of human dignity and sociality which are based on the possibility to share ideas and paths, and on the re-appropriation of a state of solidarity that is sicere and active, with multiple faces and modalities.
Maybe we could start to think about an “open” world in this sense, too, not dedicated to “professionals” and “procedures”, but also to human beings.
I want to close this update with a sincere thanks to all the people, doctors and personnel of the S. Camillo Hospital in Rome which I came across during these days: with their skill, professionality and humanity thay allowed me to confront with this condition with calmness and serenity.”
For more informations on Salvatore’s Cure and to contribute to it visit the platform: http://www.artisopensource.net/cure/