TEDxMaastricht
Dave deBronkart: Meet e-Patient Dave
Dave deBronkart: Upoznajte e-pacijenta Davea
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Kada je Dave deBronkart doznao da boluje od rijetkog i smrtonosnog raka, obratio se skupini pacijenata na internetu -- i pronašao medicinsku terapiju za koju nisu znali čak ni njegovi liječnici. Ona mu je spasila život. Sada poziva sve pacijente da razgovaraju jedni s drugima, dobro se upoznaju s vlastitim medicinskim podacima te tako počnu unapređivati zdravstvenu skrb za jednoga po jednoga e-pacijenta.
Dave deBronkart - e-Patient
Dave deBronkart wants to help patients help themselves -- by owning their medical data, connecting to fellow patients and making medical care better. Full bio
Dave deBronkart wants to help patients help themselves -- by owning their medical data, connecting to fellow patients and making medical care better. Full bio
Double-click the English transcript below to play the video.
00:15
It's an amazing thing that we're here to talk
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Nevjerojatno, ovdje smo da bismo govorili
00:18
about the year of patients rising.
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o godini jačanja uloge pacijenata.
00:21
You heard stories earlier today
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Ranije danas čuli ste priče
00:23
about patients who are taking control of their cases,
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o pacijentima koji preuzimaju kontrolu nad slučajevima,
00:26
patients who are saying, "You know what, I know what the odds are,
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koji govore: "Svjestan sam kolike su šanse,
00:29
but I'm going to go look for more information.
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ali potražit ću dodatne informacije.
00:31
I'm going to define
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Ja ću utvrditi
00:33
what the terms of my success are."
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uvjete potrebne da uspijem."
00:35
I'm going to be sharing with you
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Podijelit ću s vama
00:37
how four years ago I almost died --
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kako sam prije četiri godine gotovo umro --
00:39
found out I was, in fact,
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doznao da sam zapravo
00:41
already almost dead.
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već gotovo mrtav
00:43
And what I then found out about what's called the e-Patient movement --
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te kako sam saznao za tzv. pokret e-pacijenata --
00:46
I'll explain what that term means.
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objasnit ću taj pojam.
00:48
I had been blogging under the name Patient Dave,
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Pisao sam blog pod imenom Pacijent Dave,
00:51
and when I discovered this,
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no kada sam otkrio ovo,
00:53
I just renamed myself e-Patient Dave.
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promijenio sam ime u e-pacijent Dave.
00:55
Regarding the word "patient,"
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Što se tiče riječi "pacijent",
00:57
when I first started a few years ago
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kada sam se prije nekoliko godina
00:59
getting involved in health care
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uključio u zdravstvenu skrb
01:01
and attending meetings as just a casual observer,
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i počeo prisustvovati sastancima kao promatrač,
01:03
I noticed that people would talk about patients
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primijetio sam da ljudi govore o pacijentima
01:05
as if it was somebody who's not in the room here,
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kao o nekome tko se ne nalazi u prostoriji,
01:08
somebody out there.
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nekome tko je negdje daleko.
01:10
Some of our talks today, we still act like that.
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I u nekim govorima danas ponašamo se tako.
01:12
But I'm here to tell you,
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Ja sam ovdje da vas uvjerim,
01:14
"patient" is not a third-person word.
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"pacijent" nije neka treća osoba.
01:18
You, yourself,
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Vi sami
01:20
will find yourself in a hospital bed --
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naći ćete se u bolničkom krevetu --
01:22
or your mother, your child --
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ili vaša majka, vaše dijete --
01:24
there are heads nodding, people who say, "Yes, I know exactly what you mean."
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vidim kimanje glavama, ljudi govore: "Znam o čemu govoriš."
01:27
So when you hear what I'm going to talk about here today,
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Kada čujete o čemu ću govoriti danas,
01:30
first of all, I want to say
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prije svega želim reći
01:32
that I am here on behalf
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da sam ovdje u ime
01:34
of all the patients that I have ever met,
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svih pacijenata koje sam upoznao,
01:36
all the ones I haven't met.
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i onih koje nisam upoznao.
01:38
This is about letting patients play a more active role
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Želim da se pacijenti aktivnije uključe
01:41
in helping health care, in fixing health care.
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u popravljanje zdravstvene skrbi.
01:44
One of the senior doctors at my hospital,
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Jedan od iskusnijih liječnika u mojoj bolnici,
01:46
Charlie Safran, and his colleague, Warner Slack,
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Charlie Safran, i njegov kolega Warner Slack
01:49
have been saying for decades
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već desetljećima govore
01:51
that the most underutilized resource in all of health care
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da je najmanje korišten resurs u zdravstvu
01:54
is the patient.
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pacijent.
01:56
They have been saying that since the 1970s.
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To govore još od 1970-ih.
01:59
Now I'm going to step back in history.
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Sada ću se vratiti u prošlost.
02:01
This is from July, 1969.
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U srpanj 1969.
02:03
I was a freshman in college,
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Bio sam brucoš na fakultetu
02:05
and this was when we first landed on the Moon.
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kada smo prvi put sletjeli na Mjesec.
02:07
And it was the first time
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Prvi smo put
02:09
we had ever seen from another surface --
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s druge površine vidjeli --
02:11
that's the place where you and I are right now,
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mjesto na kojemu smo upravo sad,
02:13
where we live.
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na kojemu živimo.
02:15
The world was changing.
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Svijet se mijenjao.
02:17
It was about to change in ways that nobody could foresee.
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Slijedile su promjene koje nitko nije mogao predvidjeti.
02:20
A few weeks later,
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Nekoliko tjedana kasnije
02:22
Woodstock happened.
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dogodio se Woodstock.
02:24
Three days of fun and music.
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Tri dana zabave i glazbe.
02:26
Here, just for historical authenticity,
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Isključivo radi povijesne vjerodostojnosti
02:28
is a picture of me in that year.
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ovo sam ja te godine.
02:30
(Laughter)
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(Smijeh)
02:33
Yeah, the wavy hair, the blue eyes --
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Da, valovita kosa, plave oči --
02:35
it was really something.
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to je bilo nešto posebno.
02:37
That Fall of 1969,
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Te jeseni 1969.
02:39
the Whole Earth Catalog came out.
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izašao je Katalog cijele Zemlje.
02:41
It was a hippie journal of self-sufficiency.
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Bio je to hipijevski časopis samodostatnosti.
02:44
We think of hippies of being just hedonists,
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Mislimo da su hipiji samo hedonisti,
02:47
but there's a very strong component -- I was in that movement --
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no postoji snažan element, bio sam u tom pokretu,
02:50
a very strong component
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veoma snažan element
02:52
of being responsible for yourself.
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odgovornosti za samoga sebe.
02:54
This book's title's subtitle
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Podnaslov ove knjige
02:56
is: "Access to Tools."
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je "Pristup alatima".
02:58
And it talked about how to build your own house,
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Objašnjava kako sagraditi vlastitu kuću,
03:00
how to grow your own food, all kinds of things.
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uzgajati vlastitu hranu, razne stvari.
03:02
In the 1980s,
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U 1980-ima
03:04
this young doctor, Tom Ferguson,
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ovaj liječnik, Tom Ferguson,
03:06
was the medical editor of the Whole Earth Catalog.
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bio je medicinski urednik Kataloga cijele Zemlje.
03:09
And he saw that the great majority
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Shvatio je da većinu
03:11
of what we do in medicine and health care
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onoga što radimo u medicini i zdravstvu
03:13
is taking care of ourselves.
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čini briga za nas same.
03:15
In fact, he said it was 70 to 80 percent
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Rekao je da se radi o 70 do 80 posto
03:18
of how we actually take care of our bodies.
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od toga koliko se stvarno brinemo za svoje tijelo.
03:20
Well he also saw
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Također je shvatio
03:22
that when health care turns to medical care
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da kada zdravstvena skrb postane medicinska
03:25
because of a more serious disease,
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zbog ozbiljnije bolesti
03:27
the key thing that holds us back is access to information.
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ključni čimbenik koji nas koči je pristup informacijama.
03:30
And when the Web came along, that changed everything,
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Pojava interneta sve je promjenila.
03:33
because not only could we find information,
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Ne samo da smo mogli naći informacije,
03:36
we could find other people like ourselves
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nego i ljude slične nama
03:39
who could gather, who could bring us information.
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koji mogu sakupiti i pružiti nam informacije.
03:41
And he coined this term e-Patients --
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On je skovao termin e-pacijent --
03:44
equipped, engaged, empowered, enabled.
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opremljen, angažiran, osnažen, osposobljen.
03:47
Obviously at this stage of life
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Očito je u ovoj fazi života
03:49
he was in a somewhat more dignified form than he was back then.
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bio u dostojanstvenijem stanju nego tada.
03:52
Now I was an engaged patient
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Ja sam bio angažirani pacijent
03:54
long before I ever heard of the term.
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prije nego što sam čuo za taj termin.
03:56
In 2006, I went to my doctor for a regular physical,
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2006. sam otišao liječniku na redoviti pregled
03:59
and I had said, "I have a sore shoulder."
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i rekao da me boli rame.
04:01
Well, I got an X-ray,
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Poslao me na snimanje
04:03
and the next morning --
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i sljedeće jutro --
04:05
you may have noticed, those of you who have been through a medical crisis
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možda ste primijetili, oni koji su prošli medicinsku krizu
04:07
will understand this.
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shvatit će.
04:09
This morning, some of the speakers
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To jutro, neki govornici
04:11
named the date when they found out about their condition.
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naveli su datum kada su doznali za svoje stanje.
04:15
For me, it was 9:00 AM
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Za mene to je bilo 9:00 h
04:18
on January 3, 2007.
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3. siječnja 2007.
04:20
I was at the office; my desk was clean;
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Bio sam u uredu. Moj radni stol je bio uredan.
04:22
I had the blue partition carpet on the walls.
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Imao sam plavi pregradni tepih na zidovima.
04:26
The phone rang and it was my doctor.
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Telefon je zazvonio. Moj liječnik.
04:29
He said, "Dave, I pulled up the X-ray image
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Rekao je: "Pogledao sam rendgensku snimku
04:32
on the screen on the computer at home."
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na ekranu svog računala kod kuće."
04:34
He said, "Your shoulder's going to be fine,
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Rekao je: "Tvoje rame će biti u redu,
04:36
but Dave, there's something in your lung."
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ali imaš nešto u plućnom krilu."
04:38
And if you look in that red oval,
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Pogledajte crvenu elipsu,
04:40
that shadow was not supposed to be there.
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sjena nije trebala biti ondje.
04:44
To make a long story short,
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Da skratim priču,
04:46
I said, "So you need me to get back in there?"
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rekao sam: "Trebam doći u bolnicu?"
04:48
He said, "Yeah, we're going to need to do a CT scan of your chest."
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Rekao je: "Da, morat ćemo napraviti CT prsnog koša."
04:51
And in parting I said, "Is there anything I should do?"
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Pri pozdravljanju sam rekao: "Trebam li što učiniti?"
04:54
He said -- think about this one.
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Rekao je -- razmislite o ovome.
04:56
This is the advice your doctor gives you:
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Ovo je savjet koji ćete dobiti od liječnika.
04:58
"just go home and have a glass of wine with your wife."
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"Idite kući i popijte čašu vina sa suprugom."
05:03
I went in for the CAT scan,
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Otišao sam na CAT snimanje
05:07
and it turns out there were five of these things in both my lungs.
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i otkrili su da ih je pet u oba plućna krila.
05:10
So at that point we knew that it was cancer.
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Tada smo shvatili da se radi o raku.
05:12
We knew it wasn't lung cancer.
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Znali smo da nije rak pluća.
05:14
That meant it was metastasized from somewhere.
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Što znači da je metastazirao odnekuda.
05:17
The question was, where from?
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Pitanje je bilo otkuda.
05:20
So I went in for an ultrasound.
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Otišao sam na ultrazvuk.
05:22
I got to do what many women have --
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Imao sam priliku isprobati što i većina žena --
05:25
the jelly on the belly and bzzzz.
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gel na trbuhu i bzzzz.
05:28
My wife came with me.
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Supruga je išla sa mnom.
05:30
She's a veterinarian,
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Ona je veterinarka,
05:32
so she's seen lots of ultrasounds.
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vidjela je mnogo ultrazvučnih pregleda.
05:34
I mean, she knows I'm not a dog.
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Mislim, jasno joj je da nisam pas.
05:37
But what we saw -- this is an MRI image.
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Ono što smo vidjeli -- ovo je MRI snimka.
05:40
This is much sharper than an ultrasound would be.
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Mnogo je oštrija od ultrazvuka.
05:42
What we saw in that kidney
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U bubregu smo vidjeli
05:44
was that big blob there.
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ovu veliku nakupinu ovdje.
05:46
And there were actually two of these.
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Zapravo dvije.
05:48
One was growing out the front and it had already erupted,
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Jedna je rasla sprijeda,
05:50
and it latched onto the bowel.
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već je buknula i uhvatila se za crijevo,
05:52
One was growing out the back, and it attached to the soleus muscle,
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jedna sa stražnje strane i pričvrstila se za listoliki mišić,
05:55
which is a big muscle in the back that I'd never heard of,
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veliki mišić u leđima za koji nikad nisam čuo,
05:58
but all of a sudden I cared about it.
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no odjednom mi je postao važan.
06:01
I went home.
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Otišao sam kući.
06:03
Now I've been Googling -- I've been online since 1989 on CompuServe.
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Pretraživao sam internet pomoću Googlea, koristim internet od 1989.
06:06
I went home, and I know you can't read the details here;
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Otišao sam kući. Znam da ne vidite sve;
06:08
that's not important.
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nije važno.
06:10
My point is I went to a respected medical website,
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Posjetio sam jednu cijenjenu medicinsku stranicu,
06:12
WebMD,
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WebMD,
06:14
because I know how to filter out junk.
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jer znam kako odvojiti nebitno.
06:17
I also found my wife online.
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I ženu sam pronašao na internetu.
06:19
Before I met her,
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Prije nego sam je upoznao,
06:21
I went through some suboptimal search results.
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isprobao sam neke lošije rezultate pretrage.
06:23
(Laughter)
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(Smijeh)
06:25
So I looked for quality information.
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Tražio sam kvalitetne informacije.
06:28
There's so much about trust --
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Povjerenje je iznimno važno --
06:30
what sources of information can we trust?
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kojim izvorima možemo vjerovati?
06:32
Where does my body end
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Gdje prestaje moje tijelo
06:35
and an invader start?
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i počinje uljez?
06:37
And cancer, a tumor, is something you grow out of your own tissue.
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Rak, odnosno tumor, razvija se iz vašeg vlastitog tkiva.
06:40
How does that happen?
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Kako se to događa?
06:42
Where does medical ability
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Gdje moć medicine
06:44
end and start?
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prestaje i započinje?
06:46
Well, so what I read on WebMD:
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Na WebMD-u sam pročitao:
06:48
"The prognosis is poor
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"Prognoza je veoma loša
06:51
for progressing renal cell cancer.
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za progresivni rak bubrežnih stanica.
06:53
Almost all patients are incurable."
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Gotovo su svi pacijenti neizlječivi."
06:56
I've been online long enough to know
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Koristim se internetom dovoljno dugo
06:58
if I don't like the first results I get,
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i ako mi se ne svide prvi rezultati
07:00
I go look for more.
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nastavljam tražiti.
07:02
And what I found was on other websites,
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Ono što sam našao bilo je na drugim stranicama,
07:05
even by the third page of Google results,
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čak na trećoj stranici rezultata na Googleu:
07:07
"Outlook is bleak",
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"Izgledi su slabi."
07:09
"Prognosis is grim."
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"Prognoza je nepovoljna."
07:11
And I'm thinking, "What the heck?"
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Razmišljao sam: "Baš me briga!"
07:13
I didn't feel sick at all.
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Nisam se osjećao bolesno.
07:15
I mean, I'd been getting tired in the evening,
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Navečer bih postao umoran,
07:17
but I was 56 years old.
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ali imao sam 56 godina.
07:19
I was slowly losing weight,
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Polako sam mršavio,
07:21
but for me, that was what the doctor told me to do.
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no liječnik mi je rekao da trebam smršaviti.
07:24
It was really something.
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Bila je to velika stvar.
07:27
And this is the diagram of stage four kidney cancer
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Ovo je prikaz četvrtog stadija raka bubrega
07:30
from the drug I eventually got.
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od lijeka koji sam na kraju dobio.
07:32
Totally by coincidence, there's that thing in my lung.
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Slučajno se ta stvar nalazi u mom plućnom krilu.
07:35
In the left femur, the left thigh bone, there's another one.
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U lijevoj bedrenoj kosti nalazi se još jedna.
07:38
I had one. My leg eventually snapped.
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Ja sam imao jednu. Noga mi je otkazala.
07:40
I fainted and landed on it, and it broke.
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Onesvijestio sam se, pao na nju i slomio je.
07:43
There's one in the skull,
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Jedna se nalazi u lubanji,
07:45
and then just for good measure, I had these other tumors --
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kao da to nije dovoljno, imao sam još tumora --
07:47
including, by the time my treatment started,
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uključujući, dok je liječenje započelo,
07:49
one was growing out of my tongue.
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jedan koji se razvijao iz jezika.
07:51
I had kidney cancer growing out of my tongue.
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Rak bubrega razvijao mi se iz jezika.
07:53
And what I read was that my median survival
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Pročitao sam da su mi preostala
07:55
was 24 weeks.
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u prosjeku 24 tjedna.
07:57
This was bad.
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To je bilo loše.
07:59
I was facing the grave.
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Gledao sam smrti u oči.
08:02
I thought, "What's my mother's face going to look like
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Razmišljao sam: "Kako će moja majka izgledati
08:04
on the day of my funeral?"
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na dan mog pogreba?"
08:06
I had to sit down with my daughter
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Morao sam sjesti sa svojom kćeri
08:08
and say, "Here's the situation."
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i reći: "Ovako stvari stoje."
08:11
Her boyfriend was with her.
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Njezin je dečko bio s njom.
08:13
I said, "I don't want you guys to get married prematurely
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Rekao sam: "Ne želim da se prerano vjenčate
08:16
just so you can do it while Dad's still alive."
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samo zato da tata može biti na vjenčanju."
08:19
It's really serious.
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Ozbiljno je.
08:21
Because if you wonder why patients are motivated and want to help,
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Ako se pitate zašto su pacijenti motivirani
08:24
think about this.
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i žele pomoći, razmislite o ovome.
08:26
Well, my doctor prescribed a patient community,
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Liječnik mi je preporučio zajednicu pacijenata,
08:28
Acor.org,
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Acor.org,
08:30
a network of cancer patients, of all amazing things.
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mrežu pacijenata s rakom, od svih divnih stvari.
08:33
Very quickly they told me,
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Ubrzo su mi rekli:
08:35
"Kidney cancer is an uncommon disease.
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"Rak bubrega je rijetka bolest.
08:37
Get yourself to a specialist center.
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Nađi si specijalistički centar.
08:39
There is no cure, but there's something that sometimes works --
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Lijeka nema, no postoji nešto što ponekad pomogne --
08:42
it usually doesn't --
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obično ne --
08:44
called high-dosage interleukin.
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visoka doza interleukina.
08:46
Most hospitals don't offer it,
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Većina ga bolnica ne nudi
08:48
so they won't even tell you it exists.
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pa vam čak neće ni reći da postoji.
08:50
And don't let them give you anything else first.
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Ne dopustite da vam daju nešto drugo prije.
08:52
And by the way, here are four doctors
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Kad smo kod toga, ovo su četiri liječnika
08:54
in your part of the United States who offer it and their phone numbers."
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u vašem dijelu SAD-a koji ga nude i njihovi brojevi."
08:57
How amazing is that?
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Zar to nije izvanredno?
08:59
(Applause)
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(Pljesak)
09:02
Here's the thing.
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Evo u čemu je stvar.
09:04
Here we are, four years later:
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I sada, četiri godine kasnije
09:06
you can't find a website that gives patients that information.
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ne postoji stranica koja pacijentima nudi tu informaciju.
09:09
Government-approved, American Cancer Society,
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Vlada ga je odobrila kao i Američko društvo za karcinome,
09:12
but patients know what patients want to know.
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no pacijenti saznaju ono što žele.
09:15
It's the power of patient networks.
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To je moć mreža pacijenata.
09:18
This amazing substance --
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Ova nevjerojatna materija --
09:20
again I mentioned, where does my body end?
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ponavljam, gdje moje tijelo završava?
09:23
My oncologist and I talk a lot these days
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Moj onkolog i ja mnogo smo razgovarali
09:25
because I try to keep my talks technically accurate.
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jer sam želio da moji govori budu precizni.
09:27
And he said, "You know, the immune system
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Rekao je: "Znate, imunološki sustav
09:29
is good at detecting invaders --
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je dobar u otkrivanju uljeza --
09:32
bacteria coming from outside --
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bakterija koje dolaze izvana --
09:35
but when it's your own tissue that you've grown,
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no kada nastaje vaše vlastito tkivo
09:37
it's a whole different thing."
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to je potpuno druga stvar."
09:39
And I went through a mental exercise actually,
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Prošao sam mentalni trening
09:42
because I started a patient support community of my own
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jer sam osnovao zajednicu za potporu pacijentima
09:45
on a website,
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na internetu
09:47
and one of my friends, one of my relatives actually,
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i jedan prijatelj, odnosno rođak
09:49
said, "Look, Dave, who grew this thing?
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rekao je: "Dave, tko je proizveo tu stvar?
09:53
Are you going to set yourself up
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Možeš li odlučiti
09:55
as mentally attacking yourself?"
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sam sebe mentalno napasti?"
09:57
So we went into it.
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Upustili smo se u to.
09:59
And the story of how all that happens is in this book.
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Cijela se priča nalazi u ovoj knjizi.
10:02
Anyway, this is the way the numbers unfolded.
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Uglavnom, brojevi su se ovako razvijali.
10:04
Me being me, I put the numbers from my hospital's website
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Unio sam brojeve s bolničke web stranice,
10:07
from my tumor sizes into a spreadsheet.
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veličine svojih tumora, u tablicu.
10:09
Don't worry about the numbers.
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Brojevi nisu važni.
10:11
You see, that's the immune system.
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Ovo je imunološki sustav.
10:13
Amazing thing, those two yellow lines
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Nevjerojatna stvar, dvije žute linije
10:15
are where I got the two doses of interleukin
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označavaju kada sam dobio doze interleukina
10:17
two months apart.
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u razmaku od dva mjeseca.
10:19
And look at how the tumor sizes plummeted in between.
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Pogledajte kako su se tumori smanjili u međuvremenu.
10:22
Just incredible.
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Nevjerojatno.
10:24
Who knows what we'll be able to do when we learn to make more use of it.
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Tko zna što ćemo sve moći kad ga naučimo bolje koristiti.
10:27
The punch line is that a year and a half later,
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Poanta je da sam godinu i pol kasnije
10:30
I was there when this magnificent young woman, my daughter,
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bio prisutan kada se ova divna mlada dama, moja kći,
10:33
got married.
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udala.
10:35
And when she came down those steps,
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Kada se spustila niz stube
10:38
and it was just her and me for that moment,
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te smo ostali nasamo na trenutak
10:40
I was so glad that she didn't have to say to her mother,
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bio sam presretan što nije morala reći majci:
10:43
"I wish Dad could have been here."
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"Da je barem tata mogao biti ovdje."
10:45
And this is what we're doing
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To je ono što želimo postići
10:47
when we make health care better.
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unapređivanjem zdravstvene skrbi.
10:49
Now I want to talk briefly about a couple of other patients
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Ukratko želim spomenuti nekoliko pacijenata
10:52
who are doing everything in their power to improve health care.
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koji daju sve od sebe da bi poboljšali zdravstvenu skrb.
10:55
This is Regina Holliday,
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Ovo je Regina Holliday,
10:57
a painter in Washington D.C.,
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slikarica u Washingtonu
10:59
whose husband died of kidney cancer a year after my disease.
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čiji je muž preminuo od raka godinu dana nakon moje bolesti.
11:02
She's painting here a mural
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Ovdje slika zidnu sliku
11:04
of his horrible final weeks in the hospital.
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užasnih posljednjih tjedana u bolnici.
11:07
One of the things that she discovered
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Između ostalog je otkrila
11:09
was that her husband's medical record
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da je karton njezina muža
11:11
in this paper folder
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u ovom fasciklu
11:13
was just disorganized.
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bio dezorganiziran.
11:15
And she thought, "You know, if I have a nutrition facts label
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Pomislila je: "Imamo naljepnice s nutritivnim tablicama
11:18
on the side of a cereal box,
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na kutiji žitarica.
11:20
why can't there be something that simple
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Zašto ne postoji nešto tako jednostavno
11:22
telling every new nurse who comes on duty,
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što će svakoj sestri,
11:24
every new doctor,
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svakom novom doktoru,
11:26
the basics about my husband's condition?"
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pružiti osnove o stanju mog muža?
11:28
So she painted this medical facts mural
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Naslikala je medicinske podatke
11:30
with a nutrition label,
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s nutritivnom tablicom
11:32
something like that,
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ili nečim sličnim
11:34
in a diagram of him.
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unutar crteža svog muža.
11:36
She then, last year, painted this diagram.
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Prošle je godine naslikala ovu sliku.
11:39
She studied health care like me.
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Proučavala je zdravstvo kao i ja.
11:41
She came to realize that there were a lot of people
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Shvatila je da postoji mnogo ljudi
11:43
who'd written patient advocate books
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koji pišu knjige podrške pacijentima
11:45
that you just don't hear about at medical conferences.
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za koje nećete čuti na medicinskim konferencijama.
11:48
Patients are such an underutilized resource.
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Pacijenti su premalo korišten resurs.
11:52
Well as it says in my introduction,
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Kao što piše u mom uvodu,
11:54
I've gotten somewhat known for saying that patients should have access to their data.
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postao sam poznat jer tvrdim da treba omogućiti pristup podacima.
11:57
And I actually said at one conference a couple of years ago,
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Rekao sam na konferenciji prije nekoliko godina:
12:00
"Give me my damn data,
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"Dajte mi vražje podatke
12:02
because you people can't be trusted to keep it clean."
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jer vam se ne može vjerovati da ćete ih čuvati."
12:05
And here she has our damned data --
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Ovo su naši ograđeni podaci --
12:07
it's a pun --
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igra riječi --
12:09
which is starting to break out, starting to break through --
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koji počinju probijati branu --
12:11
the water symbolizes our data.
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voda simbolizira naše podatke.
12:14
And in fact, I want to do a little something improvisational for you here.
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Želim vam ovdje izvesti jednu improvizaciju.
12:17
There's a guy on Twitter that I know,
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Znam jednog tipa na Twitteru,
12:19
a health IT guy outside Boston,
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IT stručnjaka blizu Bostona
12:21
and he wrote the e-Patient rap.
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koji je napisao rap o e-pacijentu
12:24
And it goes like this.
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koji ide ovako:
12:32
♫ Gimme my damn data ♫
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♫ Daj mi moje podatke ♫
12:34
♫ I want to be an e-Patient just like Dave ♫
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♫ Želim biti e-pacijent kao Dave ♫
12:36
♫ Gimme my damn data, cuz it's my life to save ♫
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♫ Daj mi podatke jer radi se o mom životu ♫
12:39
Now I'm not going to go any further.
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Neću ići dalje.
12:41
(Applause)
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(Pljesak)
12:55
Well thank you. That shot the timing.
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Hvala vam. Ovo mi je skratilo vrijeme.
12:58
(Laughter)
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(Smijeh)
13:00
Think about the possibility,
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Razmislite o mogućnosti,
13:02
why is it that iPhones and iPads
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zašto iPhonei i iPadi
13:04
advance far faster
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napreduju toliko brže
13:06
than the health tools that are available to you
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od dostupnih zdravstvenih pomagala
13:08
to help take care of your family?
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koji vam pomažu u skrbi za obitelj?
13:10
Here's a website, VisibleBody.com,
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Ovo je stranica, VisibleBody.com,
13:12
that I stumbled across.
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na koju sam naletio.
13:14
And I thought, "You know, I wonder what my soleus muscle is?"
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Pomislio sam: "Pitam se što je taj listoliki mišić?"
13:17
So you can click on things and remove it.
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Možete kliknuti na stvari i ukloniti ih.
13:19
And I saw, "Aha, that's the kidney and the soleus muscle."
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Vidio sam: "To je bubreg i listoliki mišić."
13:22
And I was rotating it in 3D
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Okretao sam ga u 3D prikazu
13:24
and saying, "I understand now."
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govoreći: "Sada razumijem."
13:26
And then I realized it reminded me of Google Earth,
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Tad sam shvatio da me podsjeća na Google Earth
13:29
where you can fly to any address.
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s kojim možete otići na bilo koju adresu.
13:32
And I thought, "Why not take this
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"Zašto ne bih uzeo ovo,
13:34
and connect it to my digital scan data
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spojio to na moje podatke sa snimanja
13:37
and have Google Earth for my body?"
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i dobio Google Earth svog tijela?"
13:40
What did Google come out with this year?
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Što je Google pokrenuo ove godine?
13:42
Now there's Google Body browser.
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Preglednik Google Body.
13:45
But you see, it's still generic.
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No još uvijek je općenit.
13:47
It's not my data.
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To nisu moji podaci.
13:49
But if we can get that data out from behind the dam
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No ako možemo srušiti branu i izvući podatke
13:52
so software innovators can pounce on it,
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pa da se softverski inovatori mogu baciti na njih
13:55
the way software innovators like to do,
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kao što oni vole raditi,
13:57
who knows what we'll be able to come up with.
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tko zna do čega ćemo sve doći.
13:59
One final story: this is Kelly Young,
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Posljednja priča: ovo je Kelly Young,
14:01
a rheumatoid arthritis patient
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boluje od reumatoidnog artritisa
14:03
from Florida.
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i živi na Floridi.
14:05
This is a live story
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Ovo je aktualna priča
14:07
unfolding just in the last few weeks.
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koja se događa zadnjih nekoliko tjedana.
14:09
RA patients, as they call themselves --
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RA pacijenti, kako sami sebe zovu --
14:12
her blog is RA Warrior --
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njezin blog je RA Ratnica --
14:14
have a big problem
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imaju velik problem
14:16
because 40 percent of them have no visible symptoms.
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jer 40 posto njih nema vidljive simptome
14:19
And that makes it just really hard to tell how the disease is going.
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zbog čega je iznimno teško pratiti kako bolest napreduje.
14:22
And some doctors think, "Yeah right, you're really in pain."
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Neki liječnici misle: "Ma da, stvarno trpite bol."
14:25
Well she found, through her online research,
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Istraživanjem na internetu otkrila je
14:28
a nuclear bone scan
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nuklearno snimanje kostiju
14:30
that's usually used for cancer,
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koje se obično koristi kod raka,
14:32
but it can also reveal inflammation.
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no može otkriti i upalu.
14:34
And she saw
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Vidjela je
14:36
that if there is no inflammation
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da ako nema upale
14:38
then the scan is a uniform gray.
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snimka je jednolično siva.
14:41
So she took it.
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Otišla je na snimanje.
14:43
And the radiologist report said, "No cancer found."
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Izvješće radiologa otkrilo je da nema rak.
14:46
Well that's not what he was supposed to do with it.
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No ta informacija joj nije trebala.
14:48
So she had it read again, she wanted to have it read again,
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Tražila je da ga ponovno prouči
14:51
and her doctor fired her.
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te ju je liječnik otpustio.
14:53
She pulled up the CD.
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Pokrenula je CD.
14:55
He said, "If you don't want to follow my instructions,
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Rekao je: "Ako ne želite slijediti moje upute,
14:57
go away."
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idite."
14:59
So she pulled up the CD of the scan images,
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Pokrenula je CD sa snimkama skeniranja
15:02
and look at all those hot spots.
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pogledajte ta upaljena područja.
15:04
And she's now actively engaged on her blog
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Sada je aktivno angažirana na svom blogu
15:07
in looking for assistance in getting better care.
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i traži pomoć kako bi dobila bolju skrb.
15:10
See, that is an empowered patient -- no medical training.
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To je osnažen pacijent -- bez medicinske obuke.
15:13
We are, you are,
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Mi smo, vi ste
15:15
the most underused resource in health care.
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najmanje korišten resurs u zdravstvu.
15:18
What she was able to do
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Mogla je to napraviti
15:20
was because she had access to the raw data.
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jer je imala pristup neobrađenim podacima.
15:22
How big a deal was this?
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Zamislite!
15:24
Well at TED2009,
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Na TED-u 2009.
15:26
Tim Berners-Lee himself, inventor of the Web, gave a talk
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Tim Berners-Lee, izumitelj weba, rekao je
15:29
where he said the next big thing
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da je sljedeći veliki korak
15:32
is not to have your browser go out
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ne da preglednik pretražuje
15:34
and find other people's articles about the data,
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članke drugih ljudi o podacima,
15:36
but the raw data.
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već neobrađene podatke.
15:38
And he got them chanting by the end of the talk,
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Do kraja govora publika je skandirala:
15:40
"Raw data now.
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"Neobrađeni podaci.
15:42
Raw data now."
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Neobrađeni podaci."
15:44
And I ask you,
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Ja vas molim
15:46
three words, please, to improve health care:
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za tri riječi da bismo poboljšali zdravstvo:
15:49
let patients help.
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nek' pacijenti pomognu.
15:51
Let patients help.
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Nek' pacijenti pomognu.
15:53
Let patients help.
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Nek' pacijenti pomognu.
15:55
Let patients help.
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Nek' pacijenti pomognu.
15:57
Thank you.
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Hvala.
15:59
(Applause)
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(Pljesak)
16:15
For all the patients around the world
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Svim pacijentima diljem svijeta
16:18
watching this on the webcast,
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koji gledaju ovo putem interneta:
16:20
God bless you, everyone -- let patients help.
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Bog vas blagoslovio -- nek' pacijenti pomognu.
16:22
Host: And bless yourself. Thank you very much.
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Voditelj: Vas također. Hvala Vam.
ABOUT THE SPEAKER
Dave deBronkart - e-PatientDave deBronkart wants to help patients help themselves -- by owning their medical data, connecting to fellow patients and making medical care better.
Why you should listen
David deBronkart, better known as “e-patient Dave,” was diagnosed in January 2007 with kidney cancer at a very late stage. Odds were stacked against him, with tumors in both lungs, several bones and muscle tissue. He received great treatment, and was able to fight through and win the battle over his cancer. His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease.
deBronkart is now actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient.
Dave deBronkart | Speaker | TED.com