TEDMED 2013
Salvatore Iaconesi: What happened when I open-sourced my brain cancer
Salvatore Iaconesi: Hvad skete der da min hjernekræft blev Open Source?
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Da kunstneren, Salvatore Iaconesi, fik konstateret hjernekræft nægtede han at være en passiv patient. Hvilket Salvatore understreger betyder "den som venter". Istedet hackede han sig adgang til røntgen billederne af hans hjerne, uploadede dem til internettet og inviterede alle til at komme med idéer til en "kur". Dette resulterede i at han fik alt fra medicinal rådgivning til kunst, musik og følelsesmæssig støtte fra mere end en halv million folk fra hele verden.
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.
00:14
This back here was my brain cancer.
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Billedet her bag mig, var min hjernekræft.
00:19
Isn't it nice?
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Er den ikke bare flot?
00:20
(Laughter)
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(Latter)
00:23
The key phrase is "was,"
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Nøgleordet her er,
"var" min hjernekræft
"var" min hjernekræft
puha...
00:25
phew.
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00:27
(Applause)
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(Bifald)
00:32
Having brain cancer was really,
as you can imagine,
as you can imagine,
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Det at have hjernekræft var virkelig,
som du kan forestille dig
som du kan forestille dig
00:36
shocking news for me.
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chokerende nyheder for mig.
00:38
I knew nothing about cancer.
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Jeg vidste ingenting omkring kræft.
00:42
In Western cultures, when you have cancer,
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Når du har kræft i vestlige kulturer,
00:45
it's as if you disappear in a way.
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er det lidt som om du forsvinder.
00:48
Your life as a complex human being
is replaced by medical data:
is replaced by medical data:
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Dit liv som et komplekst menneske
bliver erstattet med data:
bliver erstattet med data:
00:55
Your images, your exams, your lab values,
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Dine røntgenbilleder, undersøgelser
dine laboratorieprøver
dine laboratorieprøver
01:01
a list of medicines.
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en liste af din medicinering.
01:03
And everyone changes as well.
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Og alle omkring dig ændrer sig.
01:06
You suddenly become a disease on legs.
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Du bliver pludselig en sygdom på to ben.
01:09
Doctors start speaking a language
which you don't understand.
which you don't understand.
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Dine læger begynder at snakke et sprog
du ikke rigtig forstår.
du ikke rigtig forstår.
01:13
They start pointing their fingers
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De peger fingre,
01:19
at your body and your images.
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af din krop og dine røntgenbilleder.
01:24
People start changing as well
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Folk begynder også at ændrer sig
01:27
because they start dealing
with the disease,
with the disease,
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fordi de begynder
at arbejde med sygdommen,
at arbejde med sygdommen,
01:31
instead of with the human being.
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istedet for mennesket.
01:33
They say, "What did the doctor say?"
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De siger, "Hvad sagde lægen?"
01:35
before even saying, "Hello."
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før de endda siger, "Hallo."
01:39
And in the meanwhile,
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Og i mellemtiden,
01:41
you're left with questions
to which nobody gives an answer.
to which nobody gives an answer.
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sidder du tilbage med alle disse spørgsmål
som ingen giver dig svaret til.
som ingen giver dig svaret til.
01:47
These are the "Can I?" questions:
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Den slags spørgsmål der siger,
"Hvad kan jeg?"
"Hvad kan jeg?"
01:49
Can I work while I have cancer?
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Kan jeg arbejder mens jeg har kræft?
01:52
Can I study? Can I make love?
Can I be creative?
Can I be creative?
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Kan jeg studere? Kan jeg have samleje?
Kan jeg være kreativ?
Kan jeg være kreativ?
01:57
And you wonder, "What have I done
to deserve this?"
to deserve this?"
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Og du begynder at tænke,
"Hvad har jeg gjort for at fortjene det her?"
"Hvad har jeg gjort for at fortjene det her?"
02:01
You wonder, "Can I change something
about my lifestyle?"
about my lifestyle?"
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Du tænker, "Kan jeg ændre nogen ting
i min tilværelse?"
i min tilværelse?"
02:05
You wonder, "Can I do something?
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Du tænker, "Kan jeg gøre noget som helst?
02:08
Are there any other options?"
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Er der nogle andre muligheder?"
02:12
And, obviously, doctors are
the good guys in all these scenarios,
the good guys in all these scenarios,
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Lægerne er selvfølgelig "the good guys"
i disse scenarier,
i disse scenarier,
02:17
because they are very professional
and dedicated to curing you.
and dedicated to curing you.
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fordi de er jo professionelle
and dedikeret til at helbrede dig.
and dedikeret til at helbrede dig.
02:23
But they also are very used
to having to deal with patients,
to having to deal with patients,
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Men de er også utrolig vante
til at arbejde med patienter,
til at arbejde med patienter,
02:29
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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hvilket betyder de ind imellem
glemmer at dette er rent tortur for dig
glemmer at dette er rent tortur for dig
02:36
and that you become,
literally, a patient --
literally, a patient --
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og at du helt literalt bliver,
en patient -
en patient -
02:41
"patient" means "the one who waits."
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"patient" betyder "den som venter".
02:43
(Laughter)
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(Latter)
02:44
Things are changing, but classically,
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Tingene er ved at ændre sig, men historisk,
02:49
they tend to not engage you in any way
to learn about your condition,
to learn about your condition,
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så har de en tendens til ikke at give
dig noget indsigt ind til din tilstand,
dig noget indsigt ind til din tilstand,
02:54
to get your friends and family engaged,
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få dine venner og familie
involveret,
involveret,
02:58
or showing you ways
in which you can change your lifestyle
in which you can change your lifestyle
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eller vise dig nogle måder
du kan ændre din livsstil
du kan ændre din livsstil
03:02
to minimize the risks
of what you're going through.
of what you're going through.
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for at reducere den risiko
du går igennem.
du går igennem.
03:06
But instead, you're forced there to wait
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Men istedet er du tvunget til at vente
03:09
in the hands of a series
of very professional strangers.
of very professional strangers.
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i hænderne på adskillige
meget professionelle fremmede.
meget professionelle fremmede.
03:16
While I was in the hospital,
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Mens jeg var på hospitalet,
03:18
I asked for a printed-out
picture of my cancer
picture of my cancer
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spurgte jeg efter en printet kopi
af min kræft
af min kræft
03:22
and I spoke with it.
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og jeg snakkede med den.
03:25
It was really hard to obtain,
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Det var utrolig svært at få fat på i øvrigt,
03:27
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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da det var ikke normal praksis at bede
om et billede af din kræft.
om et billede af din kræft.
03:32
I talked to it and I said,
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Jeg snakkede med den og sagde,
03:34
"Okay, cancer,
you're not all there is to me.
you're not all there is to me.
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"Okay kræft,
jeg er mere end bare dig.
jeg er mere end bare dig.
03:38
There's more to me.
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Jeg har mere i mig end dig."
03:40
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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En kur hvad enten den er,
skal håndtere hele min person.
skal håndtere hele min person.
03:47
And so, the next day, I left the hospital
against medical advice.
against medical advice.
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Den næste dag, forlod jeg hospitalet
imod deres anbefaling.
imod deres anbefaling.
03:53
I was determined to change
my relationship with the cancer
my relationship with the cancer
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Jeg havde besluttet at ændre
mit forhold med min kræft
mit forhold med min kræft
03:57
and I was determined
to learn more about my cancer
to learn more about my cancer
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og ville målbevidst
lære mere om min kræft
lære mere om min kræft
04:00
before doing anything
as drastic as a surgery.
as drastic as a surgery.
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før jeg ville gå igennem noget
så drastisk som en operation.
så drastisk som en operation.
04:06
I'm an artist, I use several forms
of open-source technologies
of open-source technologies
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Jeg er en kunster og bruger flere
forskellige Open Source-teknologier
forskellige Open Source-teknologier
04:12
and open information in my practice.
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og tilgængelig information i mit erhverv.
04:15
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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Så mit bedste bud var at få det hele
ud af døren, få dataen ud i verdenen
ud af døren, få dataen ud i verdenen
04:21
and use it so that it could be
accessed by anyone.
accessed by anyone.
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og bruge det på den måde at alle
kunne få adgang til det.
kunne få adgang til det.
04:28
So I created a website,
which is called La Cura,
which is called La Cura,
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Jeg lavede en hjemmeside
som blev kaldt La Cura,
som blev kaldt La Cura,
04:32
on which I put my medical data, online.
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hvor jeg så gemte min
medicinske optegnelser.
medicinske optegnelser.
04:35
I actually had to hack it
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Jeg var faktisk nødt til at "hacke" dataene,
04:37
and that's a thing which we
can talk about in another speech.
can talk about in another speech.
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men det er en ting vi kan tale om
i en anden samtale.
i en anden samtale.
04:41
(Laughter)
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(Latter)
04:42
I chose this word, La Cura --
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Jeg havde kaldt hjemmesiden
La Cura.
La Cura.
04:45
La Cura in Italian means "the cure" --
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La Cura på Italiensk betyder "kuren".,
04:47
because in many different cultures,
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fordi for mange forskellige kulturer
04:50
the word "cure" can mean
many different things.
many different things.
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har ordet "kur" en helt anden
definition og betydning.
definition og betydning.
04:55
In our Western cultures,
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I den Vestlige kultur,
04:56
it means eradicating
or reversing a disease,
or reversing a disease,
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betyder "kur" udryddelsen
eller afbrydelsen af en sygdom,
eller afbrydelsen af en sygdom,
05:01
but in different cultures,
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men i andre kulturer,
05:02
for example, a culture from Asia,
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f.eks. det kunne være
en kultur i Asien,
en kultur i Asien,
05:06
from the Mediterranean,
from Latin countries, from Africa,
from Latin countries, from Africa,
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Middelhavet, Latinamerika eller Afrika
05:10
it can mean many more things.
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kan det have mange andre
betydninger.
betydninger.
05:12
Of course, I was interested
in the opinions of doctors
in the opinions of doctors
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Selvfølgelig var jeg interesseret
i lægernes opfattelse
i lægernes opfattelse
05:18
and healthcare providers,
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og meninger fra
udbydere af sundhedspleje,
udbydere af sundhedspleje,
05:20
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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men jeg var også interesseret
i kunstnerens kur, poetens kur,
i kunstnerens kur, poetens kur,
05:26
of the designer,
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i designerens kur
05:28
of, who knows, the musicians.
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eller en musikers kur.
05:32
I was interested in the social cure,
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Jeg var interesseret i den sociale kur
05:35
I was interested in
the psychological cure,
the psychological cure,
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og den psykologiske kur.
05:38
I was interested in the spiritual cure,
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Jeg var interesseret i den
spirituelle kur.
spirituelle kur.
05:41
I was interested in the emotional cure,
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Jeg var interesseret i den
følelsesmæssige kur.
følelsesmæssige kur.
05:44
I was interested in any form of cure.
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Fundamentalt var jeg interesseret
i hvilken som helst kur.
i hvilken som helst kur.
05:48
And, it worked.
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Og, det fungerede.
05:52
The La Cura website went viral.
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La Cura hjemmesiden gik viral.
05:55
I received lots of media attention
from Italy and from abroad
from Italy and from abroad
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Jeg modtog masser af interesse fra pressen
fra Italien og udenlandsk
fra Italien og udenlandsk
06:00
and I quickly received
more than 500,000 contacts --
more than 500,000 contacts --
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og fik hurtig mere end
500,000 henvendelser
500,000 henvendelser
06:06
emails, social networking --
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fra emails, social media osv.
06:08
most of them were a suggestion
on how to cure my cancer,
on how to cure my cancer,
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Mange af dem var forslag
på hvordan kræften kunne helbedres,
på hvordan kræften kunne helbedres,
06:11
but more of them were about
how to cure myself
how to cure myself
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men de fleste var mere omkring
hvordan jeg kunne helbrede mig selv
hvordan jeg kunne helbrede mig selv
06:15
as a full individual.
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som et individ og person.
06:18
For example, many thousands of videos,
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F.eks. tusindvis af videoklip,
06:22
images, pictures, art performances
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billeder, fotografier, kunstfremvisninger
06:26
were produced for La Cura.
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blev produceret for La Cura.
06:28
For example, here we see
Francesca Fini in her performance.
Francesca Fini in her performance.
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Her er et eksempel af Francesca Fini
i hendes fremvisning.
i hendes fremvisning.
06:33
Or, as artist Patrick Lichty has done:
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Et andet eksempel var Patrick Lichty,
06:37
He produced a 3D sculpture of my tumor
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han lavede en 3D skulptur af min svulst
06:42
and put it on sale on Thingiverse.
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og satte den op for salg på Thingiverse.
06:44
Now you can have my cancer, too!
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Køb, nu kan du også have min kræft!
06:47
(Laughter)
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(Latter)
06:49
Which is a nice thing,
if you think about it,
if you think about it,
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Hvilket er trøstende,
hvis du tænker over det,
hvis du tænker over det,
06:52
we can share our cancer.
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vi kan dele vores kræft.
06:56
And this was going on --
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Og det her blev større og større
06:58
scientists, the traditional
medicine experts,
medicine experts,
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jeg hørte fra professorer, traditionelle
medicinske eksperter,
medicinske eksperter,
07:02
several researchers, doctors --
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adskillige forskere, læger
07:03
all connected with me to give advice.
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alle tog kontakt med mig for at give
deres råd.
deres råd.
07:06
With all this information and support,
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Med al denne information og support
07:08
I was able to form a team
of several neurosurgeons,
of several neurosurgeons,
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var jeg istand til at samle et hold
af adskillige neurokirurger,
af adskillige neurokirurger,
07:14
traditional doctors,
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traditionelle doktorer,
07:16
oncologists, and several
hundred volunteers
hundred volunteers
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onkologer og mange
hundrede frivillige
hundrede frivillige
07:23
with whom I was able to discuss
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med hvem jeg kunne diskutere
07:26
the information I was receiving,
which is very important.
which is very important.
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den information jeg modtog,
hvilket var utrolig vigtigt.
hvilket var utrolig vigtigt.
07:31
And together, we were able to form
a strategy for my own cure
a strategy for my own cure
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Og sammen var vi istand til at formulere
en strategi for min egen kur
en strategi for min egen kur
07:38
in many languages,
according to many cultures.
according to many cultures.
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i mange forskellige sprog fra
adskillige kulturer.
adskillige kulturer.
07:41
And the current strategy
spans the whole world
spans the whole world
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Den nuværende strategi
omfatter nu hele verden
omfatter nu hele verden
07:45
and thousands of years of human history,
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og årevis af fælles
historie
historie
07:47
which is quite remarkable for me.
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hvilket er helt bemærkelsesværdigt
for mig.
for mig.
07:49
[Surgery]
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[Operationen]
07:51
The follow-up MRIs showed, luckily,
little to no growth of the cancer.
little to no growth of the cancer.
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Min efterfølgende MRI viste, heldigvis,
lidt til ingen vækst af min kræft.
lidt til ingen vækst af min kræft.
07:57
So I was able to take my time and choose.
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Så jeg var istand til at tage min tid
før operationen
før operationen
08:00
I chose the doctor I wanted to work with,
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Jeg valgte den doktor,
jeg ville arbejde med.
jeg ville arbejde med.
08:04
I chose the hospital I wanted to stay in,
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Jeg valgte det hospital,
jeg havde mest lyst til.
jeg havde mest lyst til.
08:06
and in the meanwhile, I was supported
by thousands of people,
by thousands of people,
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Alt imens jeg blev supporteret
af tusindvis af folk,
af tusindvis af folk,
08:10
none of whom felt pity for me.
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men ingen som følte medlidenhed.
08:13
Everyone felt like they could
take an active role
take an active role
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Alle havde en klar følelse af at
de tog en aktiv rolle
de tog en aktiv rolle
08:19
in helping me to get well,
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i at hjælpe mig med at få det bedre
08:21
and this was the most important
part of La Cura.
part of La Cura.
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og dette var den mest vigtigste del
af La Cura.
af La Cura.
08:26
What are the outcomes?
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Hvad er resultaterne?
08:28
I'm fine, as you can see, pretty fine.
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Jeg har det godt, som i kan se, ret godt.
08:30
(Applause)
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(Bifald)
08:35
I have excellent news:
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Jeg har haft fantastiske nyheder
siden operationen.
siden operationen.
08:38
After the surgery --
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08:39
I have -- I had a very low-grade glioma,
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Jeg havde kun en lille ufarlig glioma
08:45
which is a "good" kind of cancer
which doesn't grow a lot.
which doesn't grow a lot.
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hvilket er en "god" slags kræft
hvilket ikke vokser meget.
hvilket ikke vokser meget.
08:49
I have completely changed
my life and my lifestyle.
my life and my lifestyle.
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Jeg har fuldstændig ændret
mit liv og min livsstil.
mit liv og min livsstil.
08:54
Everything I did was thoughtfully
designed to get me engaged.
designed to get me engaged.
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Alting fra La Cura var designet med
omtanke for at have mig engageret
omtanke for at have mig engageret
09:00
Up until the very last few
minutes of the surgery,
minutes of the surgery,
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helt indtil de helt sidste minutter
af min operation,
af min operation,
09:04
which was very intense,
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hvilket var meget intens.
En matrix af elektroder
var implanteret i min hjerne,
var implanteret i min hjerne,
09:06
a matrix of electrodes
was implanted in my brain
was implanted in my brain
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i denne side,
09:10
from this side,
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09:12
to be able to build a functional map
of what the brain controls.
of what the brain controls.
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for at bygge et funktionelt kort op
af hvordan min hjerne reagerede.
af hvordan min hjerne reagerede.
09:17
And right before the operation,
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Og op indtil kun sekunder før operationen
var vi i stand til at diskutere
dette funktionelle kort af min hjerne,
dette funktionelle kort af min hjerne,
09:20
we were able to discuss
the functional map of my brain
the functional map of my brain
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med lægerne, for at forstå
hvilken risko jeg var ude i
hvilken risko jeg var ude i
09:27
with the doctor, to understand
which risks I was running into
which risks I was running into
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og hvis der var nogle risici jeg gerne
ville undgå.
ville undgå.
09:32
and if there were any I wanted to avoid.
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09:36
Obviously, there were.
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Selvfølgelig, var der det.
[Åbenhed]
09:38
[Open]
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09:39
And this openness was really
the fundamental part of La Cura.
the fundamental part of La Cura.
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Denne åbenhed var virkelig
den fundamentale del af La Cura.
den fundamentale del af La Cura.
Tusindvis af folk delte
deres historier, deres erfaringer.
deres historier, deres erfaringer.
09:44
Thousands of people shared
their stories, their experiences.
their stories, their experiences.
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Læger fik en chance for at snakke med folk
de ikke typisk konsultere
de ikke typisk konsultere
09:49
Doctors got to talk with people
they don't usually consult
they don't usually consult
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når de tænker på og arbejder med kræft.
09:54
when they think about cancer.
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09:59
I'm a self-founding,
continuous state of translation
continuous state of translation
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Jeg ser mig selv som en autonom stiftelse,
en løbende tilstand af oversættelse
en løbende tilstand af oversættelse
10:04
among many different languages,
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blandt mange forskellige sprog,
hvor videnskab møder sindsbevægelser
10:06
in which science meets emotion
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10:10
and conventional research
meets traditional research.
meets traditional research.
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og konventionel forskning
møder traditionel forskning.
møder traditionel forskning.
[Samfund]
10:14
[Society]
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10:16
The most important thing of La Cura
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Et andet meget vigtig element af La Cura
var at føle sig som en del af et utrolig
engageret og tilsluttet samfund
engageret og tilsluttet samfund
10:21
was to feel like a part
of a really engaged and connected society
of a really engaged and connected society
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hvis velvære var afhængig
af velværet af alle dets komponenter.
af velværet af alle dets komponenter.
10:28
whose wellness really depends
on the wellness of all of its components.
on the wellness of all of its components.
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Denne globale orkestrering
er min Open-Source kur for kræft,
er min Open-Source kur for kræft,
10:36
This global performance
is my open-source cure for cancer.
is my open-source cure for cancer.
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Og som jeg føler det,
10:41
And from what I feel,
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er det ikke blot en kur for mig,
men for os alle.
men for os alle.
10:43
it's a cure for me, but for us all.
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10:46
Thank you.
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Tak skal i have.
10:47
(Applause).
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(Bifald)
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