Editor’s note: Salvatore Iaconesi is a 39-year-old TED associate and a artist and technologist behind Art is Open Source. He teaches digital pattern during La Sapienza University of Rome. His medical annals are publicly permitted during artisopensource.net/cure. Iaconesi spoke in Sep during TEDx Transmedia, an exclusively orderly eventuality in Rome. TED is a nonprofit classification dedicated to “Ideas value spreading” that it creates permitted by talks posted on a website.
(CNN) — we was recently diagnosed with mind cancer.
This was intolerable news. Sitting opposite from a alloy holding a clinical folder with your name on it, and conference him contend a difference “low-grade glioma,” “language and grasp areas of your brain,” “surgery” and “chemotherapy” is a unequivocally uncanny experience.
My initial thought was to find other opinions. Maybe this sanatorium is wrong. Maybe there are other places that wouldn’t need to do surgery. Maybe there is a laser, a chemical, an ancient tradition, a shaman, a scientist, a nanorobot.
I felt deficient about a approach that a medical complement was doing my situation.
Stay adult to date on a latest opinion, research and conversations by amicable media. Join us during Facebook/CNNOpinion and follow us @CNNOpinion on Twitter. We acquire your ideas and comments.
Being “diseased” is like a state of dangling life. Can we work? Have fun? Be creative? Not really.
When we are announced “diseased,” we turn a set of medical records, therapy, dosages, examination dates. It’s as if we disappear, transposed by your disease.
I immediately asked for my clinical annals in digital format, and left a hospital.
TED.com: A new bargain of cancer
My categorical design — a best thing we felt that we could do — was to make my digital information permitted on a Internet, in formats that would concede people of mixed cultures, skills, professions and inclinations to access, use, recombine and redistribute it.
5-time cancer survivor pays it brazen
Fighting cancer with fashion
November is Lung Cancer Awareness Month
Can vitamins assistance quarrel off cancer?
Why would we wish them to entrance this information?
To assistance me find a best heal for myself, and in a routine to furnish estimable amicable change by redefining a word “cure.”
But when we went home to tell my medical records, all we could do was send them to specialized professionals, possibly by duplicating a CDs and mailing them or by duplicating their sealed format and uploading them somewhere.
I had no approach entrance to my possess information, given we use Linux and OSX rather than a files’ Windows-based viewer. As a program engineer, we found program and programming collection to penetrate a files and make them open — though a nontechnical chairman would have problem creation use of their possess medical data.
I needed, initial of all, something that we could simply share, maybe permitting people to open it from their browsers, or even from their smartphones.
TED.com: New plan in fight on cancer
So we non-stop adult my medical annals and converted a information into mixed formats: spreadsheets, databases, metadata files in XML and video, picture and sound files. And we published them on The Cure.
The responses have been incredible. More than 200,000 people have visited a site and many have supposing videos, poems, medical opinions, suggestions of choice cures or lifestyles, personal stories of success or, sadly, failures — and simply a statement, “I am here.” Among them were some-more than 90 doctors and researchers who offering information and support.
The geneticist and TED associate Jimmy Lin has offering to method a genome of my expansion after medicine — in an open-source platform, of course. And a Italian council has been debating a suit to make all patients’ medical annals some-more open and accessible, that would be extraordinary swell in my country.
Within one day we also listened from dual opposite doctors, who endorsed identical kinds of surgery. The initial chronicle is “awake surgery,” that monitors a mind in genuine time as opposite tools are touched. The second is a movement in that electrodes are placed on a mind during surgery, and afterwards a mind map is constructed (with a studious awake) and used during a second medicine (with a studious entirely unconscious).
TED.com: Your genes are not your fate
Existing portals and websites that concede patients and ex-patients to sell stories and opinions already exist. But we’re articulate about something different.
I see a heal as a energetic process, in that mixed doctors, professionals, artists, scientists and others join as a multitude — to converse, support any other, be open to several contributions and figure solutions that combine humanity, technology, technique, truth and art. Creativity and “normal life” turn partial of a routine and move “diseased” people behind to life.
To me, a loyal heal is complete, is human, and has dignity. And it never ends.
Such a heal is a sermon in that “experts” say their standing — and in fact, an huge appreciate we goes out to all a intensely competent professionals who are constantly responding to my calls — though a whole routine opens adult to possibility.
TED.com: The intensity of regenerative medicine
And this is accurately what is happening: We are formulating a heal by ordering a contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and devout healers. The active appearance of everybody concerned — both experts and ex-patients — is naturally filtering out any deleterious idea that competence be proposed.
To grasp this kind of cure, we contingency be open to strategies from opposite cultures and philosophical orientations. And we contingency welcome a wider, some-more surpassing sermon about a ways in that information circulates digitally.
For now, I’m following a formidable plan grown with a assistance of a array of doctors and experts who responded to my open-source heal site and have suggested a accumulation of therapies to understanding with a disease.
As of now, my cancer expansion has stopped. We are watchful for a subsequent exam formula to confirm when and if to ensue to surgery.
How can we be involved? Tell us about glorious techniques and technologies from around a universe that can effectively confront low-grade glioma. We have explored many opinions in Italy and Europe, though fewer outside.
Share your stories and experiences, a solutions we have found, a rascal we have encountered.
Send us videos, poems, images, audio or content that we see as applicable to a unfolding in that art and creativity can assistance form a finish and ongoing cure.
Or tell us, “I am here!” — alive and connected, prepared to support a associate tellurian being.
Follow @CNNOpinion on Twitter.
Join us during Facebook/CNNOpinion.
The opinions voiced in this explanation are only those of Salvatore Iaconesi.
More on: Health Medicine Network