TEDMED 2013
Salvatore Iaconesi: What happened when I open-sourced my brain cancer
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When artist Salvatore Iaconesi was diagnosed with brain cancer, he refused to be a passive patient -- which, he points out, means "one who waits." So he hacked his brain scans, posted them online, and invited a global community to pitch in on a "cure." This sometimes meant medical advice, and it sometimes meant art, music, emotional support -- from more than half a million people.
Salvatore Iaconesi - Open-source engineer and artist
An artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer Full bio
An artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer Full bio
Double-click the English transcript below to play the video.
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This back here was my brain cancer.
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Isn't it nice?
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(Laughter)
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The key phrase is "was,"
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phew.
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(Applause)
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Having brain cancer was really,
as you can imagine,
as you can imagine,
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shocking news for me.
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I knew nothing about cancer.
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In Western cultures, when you have cancer,
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it's as if you disappear in a way.
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Your life as a complex human being
is replaced by medical data:
is replaced by medical data:
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Your images, your exams, your lab values,
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a list of medicines.
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And everyone changes as well.
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You suddenly become a disease on legs.
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Doctors start speaking a language
which you don't understand.
which you don't understand.
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They start pointing their fingers
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at your body and your images.
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People start changing as well
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because they start dealing
with the disease,
with the disease,
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instead of with the human being.
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They say, "What did the doctor say?"
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before even saying, "Hello."
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And in the meanwhile,
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you're left with questions
to which nobody gives an answer.
to which nobody gives an answer.
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These are the "Can I?" questions:
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Can I work while I have cancer?
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Can I study? Can I make love?
Can I be creative?
Can I be creative?
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And you wonder, "What have I done
to deserve this?"
to deserve this?"
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You wonder, "Can I change something
about my lifestyle?"
about my lifestyle?"
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You wonder, "Can I do something?
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Are there any other options?"
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And, obviously, doctors are
the good guys in all these scenarios,
the good guys in all these scenarios,
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because they are very professional
and dedicated to curing you.
and dedicated to curing you.
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But they also are very used
to having to deal with patients,
to having to deal with patients,
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so I'd say that they sometimes
lose the idea that this is torture for you
lose the idea that this is torture for you
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and that you become,
literally, a patient --
literally, a patient --
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"patient" means "the one who waits."
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(Laughter)
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Things are changing, but classically,
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they tend to not engage you in any way
to learn about your condition,
to learn about your condition,
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to get your friends and family engaged,
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or showing you ways
in which you can change your lifestyle
in which you can change your lifestyle
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to minimize the risks
of what you're going through.
of what you're going through.
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But instead, you're forced there to wait
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in the hands of a series
of very professional strangers.
of very professional strangers.
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While I was in the hospital,
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I asked for a printed-out
picture of my cancer
picture of my cancer
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and I spoke with it.
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It was really hard to obtain,
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because it's not common practice
to ask for a picture of your own cancer.
to ask for a picture of your own cancer.
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I talked to it and I said,
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"Okay, cancer,
you're not all there is to me.
you're not all there is to me.
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There's more to me.
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A cure, whichever it is, will have
to deal with the whole of me."
to deal with the whole of me."
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And so, the next day, I left the hospital
against medical advice.
against medical advice.
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I was determined to change
my relationship with the cancer
my relationship with the cancer
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and I was determined
to learn more about my cancer
to learn more about my cancer
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before doing anything
as drastic as a surgery.
as drastic as a surgery.
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I'm an artist, I use several forms
of open-source technologies
of open-source technologies
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and open information in my practice.
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So my best bet was to get it all
out there, get the information out there,
out there, get the information out there,
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and use it so that it could be
accessed by anyone.
accessed by anyone.
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So I created a website,
which is called La Cura,
which is called La Cura,
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on which I put my medical data, online.
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I actually had to hack it
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and that's a thing which we
can talk about in another speech.
can talk about in another speech.
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(Laughter)
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I chose this word, La Cura --
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La Cura in Italian means "the cure" --
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because in many different cultures,
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the word "cure" can mean
many different things.
many different things.
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In our Western cultures,
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it means eradicating
or reversing a disease,
or reversing a disease,
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but in different cultures,
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for example, a culture from Asia,
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from the Mediterranean,
from Latin countries, from Africa,
from Latin countries, from Africa,
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it can mean many more things.
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Of course, I was interested
in the opinions of doctors
in the opinions of doctors
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and healthcare providers,
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but I was also interested in
the cure of the artist, of the poet,
the cure of the artist, of the poet,
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of the designer,
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of, who knows, the musicians.
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I was interested in the social cure,
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I was interested in
the psychological cure,
the psychological cure,
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I was interested in the spiritual cure,
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I was interested in the emotional cure,
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I was interested in any form of cure.
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And, it worked.
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The La Cura website went viral.
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I received lots of media attention
from Italy and from abroad
from Italy and from abroad
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and I quickly received
more than 500,000 contacts --
more than 500,000 contacts --
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emails, social networking --
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most of them were a suggestion
on how to cure my cancer,
on how to cure my cancer,
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but more of them were about
how to cure myself
how to cure myself
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as a full individual.
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For example, many thousands of videos,
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images, pictures, art performances
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were produced for La Cura.
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For example, here we see
Francesca Fini in her performance.
Francesca Fini in her performance.
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Or, as artist Patrick Lichty has done:
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He produced a 3D sculpture of my tumor
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and put it on sale on Thingiverse.
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Now you can have my cancer, too!
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(Laughter)
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Which is a nice thing,
if you think about it,
if you think about it,
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we can share our cancer.
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And this was going on --
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scientists, the traditional
medicine experts,
medicine experts,
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several researchers, doctors --
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all connected with me to give advice.
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With all this information and support,
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I was able to form a team
of several neurosurgeons,
of several neurosurgeons,
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traditional doctors,
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oncologists, and several
hundred volunteers
hundred volunteers
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with whom I was able to discuss
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the information I was receiving,
which is very important.
which is very important.
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And together, we were able to form
a strategy for my own cure
a strategy for my own cure
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in many languages,
according to many cultures.
according to many cultures.
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And the current strategy
spans the whole world
spans the whole world
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and thousands of years of human history,
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which is quite remarkable for me.
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[Surgery]
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The follow-up MRIs showed, luckily,
little to no growth of the cancer.
little to no growth of the cancer.
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So I was able to take my time and choose.
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I chose the doctor I wanted to work with,
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I chose the hospital I wanted to stay in,
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and in the meanwhile, I was supported
by thousands of people,
by thousands of people,
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none of whom felt pity for me.
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Everyone felt like they could
take an active role
take an active role
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in helping me to get well,
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and this was the most important
part of La Cura.
part of La Cura.
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What are the outcomes?
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I'm fine, as you can see, pretty fine.
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(Applause)
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I have excellent news:
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After the surgery --
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I have -- I had a very low-grade glioma,
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which is a "good" kind of cancer
which doesn't grow a lot.
which doesn't grow a lot.
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I have completely changed
my life and my lifestyle.
my life and my lifestyle.
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Everything I did was thoughtfully
designed to get me engaged.
designed to get me engaged.
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Up until the very last few
minutes of the surgery,
minutes of the surgery,
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which was very intense,
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a matrix of electrodes
was implanted in my brain
was implanted in my brain
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from this side,
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to be able to build a functional map
of what the brain controls.
of what the brain controls.
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And right before the operation,
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we were able to discuss
the functional map of my brain
the functional map of my brain
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with the doctor, to understand
which risks I was running into
which risks I was running into
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and if there were any I wanted to avoid.
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Obviously, there were.
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[Open]
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And this openness was really
the fundamental part of La Cura.
the fundamental part of La Cura.
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Thousands of people shared
their stories, their experiences.
their stories, their experiences.
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Doctors got to talk with people
they don't usually consult
they don't usually consult
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when they think about cancer.
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I'm a self-founding,
continuous state of translation
continuous state of translation
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among many different languages,
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in which science meets emotion
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and conventional research
meets traditional research.
meets traditional research.
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[Society]
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The most important thing of La Cura
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was to feel like a part
of a really engaged and connected society
of a really engaged and connected society
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whose wellness really depends
on the wellness of all of its components.
on the wellness of all of its components.
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This global performance
is my open-source cure for cancer.
is my open-source cure for cancer.
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And from what I feel,
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it's a cure for me, but for us all.
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Thank you.
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(Applause).
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ABOUT THE SPEAKER
Salvatore Iaconesi - Open-source engineer and artistAn artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer
Why you should listen
"I have a brain cancer.” Data artist and TED Fellow Salvatore Iaconesi posted these words on his website September 10, 2012. He wrote:
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.
In cracking his scans, X-rays, lab notes and charts, and opening them to the world, he laid out a model for open-sourcing not only a support group, but a whole cure (he calls it, in his native Italian, "La cura"). And he means a cure of any kind: "There are cures for the body, for spirit, for communication." He had brain surgery in February 2013, "and everything went perfectly." Now he is working on sharing the benefits of his experience.
More profile about the speakerYesterday 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.
In cracking his scans, X-rays, lab notes and charts, and opening them to the world, he laid out a model for open-sourcing not only a support group, but a whole cure (he calls it, in his native Italian, "La cura"). And he means a cure of any kind: "There are cures for the body, for spirit, for communication." He had brain surgery in February 2013, "and everything went perfectly." Now he is working on sharing the benefits of his experience.
Salvatore Iaconesi | Speaker | TED.com