Dave deBronkart: Meet e-Patient Dave

Prevoditelj: Vedrana Vučković Jakšić Recezent: Tilen Pigac - EFZG

Nevjerojatno, ovdje smo da bismo govorili

It's an amazing thing

that we're here to talk about the year of patients rising.

o godini jačanja uloge pacijenata.

Ranije danas čuli ste priče

You heard stories earlier today

o pacijentima koji preuzimaju kontrolu nad slučajevima,

about patients who are taking control of their cases,

koji govore: "Svjestan sam kolike su šanse,

patients who are saying,

"You know what, I know what the odds are,

ali potražit ću dodatne informacije.

but I'm going to look for more information.

Ja ću utvrditi

I'm going to define what the terms of my success are."

uvjete potrebne da uspijem."

Podijelit ću s vama

I'm going to be sharing with you how, four years ago, I almost died --

kako sam prije četiri godine gotovo umro --

doznao da sam zapravo

found out I was, in fact, already almost dead --

već gotovo mrtav

and what I then found out

te kako sam saznao za tzv. pokret e-pacijenata --

about what's called the e-Patient movement.

objasnit ću taj pojam.

I'll explain what that term means.

Pisao sam blog pod imenom Pacijent Dave,

I had been blogging under the name "Patient Dave,"

and when I discovered this,

no kada sam otkrio ovo,

I just renamed myself e-Patient Dave.

promijenio sam ime u e-pacijent Dave.

Regarding the word "patient":

Što se tiče riječi "pacijent",

When I first started a few years ago getting involved in health care

kada sam se prije nekoliko godina

uključio u zdravstvenu skrb

and attending meetings as just a casual observer,

i počeo prisustvovati sastancima kao promatrač,

primijetio sam da ljudi govore o pacijentima

I noticed that people would talk about patients

kao o nekome tko se ne nalazi u prostoriji,

as if it was somebody who's not in the room here --

somebody out there.

nekome tko je negdje daleko.

Some of our talks today, we still act like that.

I u nekim govorima danas ponašamo se tako.

But I'm here to tell you:

Ja sam ovdje da vas uvjerim,

"patient" is not a third-person word.

"pacijent" nije neka treća osoba.

All right?

Vi sami

You yourself will find yourself in a hospital bed --

naći ćete se u bolničkom krevetu --

or your mother, your child --

ili vaša majka, vaše dijete --

there are heads nodding, people who say,

vidim kimanje glavama, ljudi govore: "Znam o čemu govoriš."

"Yes, I know exactly what you mean."

So when you hear what I'm going to talk about here today,

Kada čujete o čemu ću govoriti danas,

prije svega želim reći

first of all, I want to say that I am here

da sam ovdje u ime

on behalf of all the patients that I have ever met,

svih pacijenata koje sam upoznao,

all the ones I haven't met.

i onih koje nisam upoznao.

This is about letting patients play a more active role

Želim da se pacijenti aktivnije uključe

u popravljanje zdravstvene skrbi.

in helping health care, in fixing health care.

Jedan od iskusnijih liječnika u mojoj bolnici,

One of the senior doctors at my hospital,

Charlie Safran, i njegov kolega Warner Slack

Charlie Safran, and his colleague, Warner Slack,

have been saying for decades

već desetljećima govore

that the most underutilized resource in all of health care

da je najmanje korišten resurs u zdravstvu

pacijent.

is the patient.

They have been saying that since the 1970s.

To govore još od 1970-ih.

Now, I'm going to step back in history.

Sada ću se vratiti u prošlost.

This is from July, 1969.

U srpanj 1969.

I was a freshman in college,

Bio sam brucoš na fakultetu

and this was when we first landed on the Moon.

kada smo prvi put sletjeli na Mjesec.

Prvi smo put

And it was the first time

we had ever seen from another surface --

s druge površine vidjeli --

mjesto na kojemu smo upravo sad,

that's the place where you and I are right now,

na kojemu živimo.

where we live.

The world was changing.

Svijet se mijenjao.

It was about to change in ways that nobody could foresee.

Slijedile su promjene koje nitko nije mogao predvidjeti.

A few weeks later, Woodstock happened.

Nekoliko tjedana kasnije

dogodio se Woodstock.

Three days of fun and music.

Tri dana zabave i glazbe.

Here, just for historical authenticity,

Isključivo radi povijesne vjerodostojnosti

is a picture of me in that year.

ovo sam ja te godine.

(Laughter)

(Smijeh)

Yeah, the wavy hair, the blue eyes --

Da, valovita kosa, plave oči --

it was really something.

to je bilo nešto posebno.

That fall of 1969,

Te jeseni 1969.

the Whole Earth Catalog came out.

izašao je Katalog cijele Zemlje.

It was a hippie journal of self-sufficiency.

Bio je to hipijevski časopis samodostatnosti.

Mislimo da su hipiji samo hedonisti,

We think of hippies of being just hedonists,

no postoji snažan element, bio sam u tom pokretu,

but there's a very strong component -- I was in that movement --

veoma snažan element

a very strong component of being responsible for yourself.

odgovornosti za samoga sebe.

This book's title's subtitle is "Access to Tools."

Podnaslov ove knjige

je "Pristup alatima".

It talked about how to build your own house,

Objašnjava kako sagraditi vlastitu kuću,

how to grow your own food, all kinds of things.

uzgajati vlastitu hranu, razne stvari.

U 1980-ima

In the 1980s,

this young doctor, Tom Ferguson,

ovaj liječnik, Tom Ferguson,

was the medical editor of the Whole Earth Catalog.

bio je medicinski urednik Kataloga cijele Zemlje.

He saw that the great majority of what we do in medicine and health care

Shvatio je da većinu

onoga što radimo u medicini i zdravstvu

čini briga za nas same.

is taking care of ourselves.

Rekao je da se radi o 70 do 80 posto

In fact, he said it was 70 to 80 percent

of how we actually take care of our bodies.

od toga koliko se stvarno brinemo za svoje tijelo.

Well, he also saw that when health care turns to medical care

Također je shvatio

da kada zdravstvena skrb postane medicinska

because of a more serious disease,

zbog ozbiljnije bolesti

the key thing that holds us back is access to information.

ključni čimbenik koji nas koči je pristup informacijama.

And when the Web came along, that changed everything,

Pojava interneta sve je promjenila.

Ne samo da smo mogli naći informacije,

because not only could we find information,

we could find other people like ourselves

nego i ljude slične nama

who could gather, who could bring us information.

koji mogu sakupiti i pružiti nam informacije.

On je skovao termin e-pacijent --

And he coined this term "e-Patients" --

equipped, engaged, empowered, enabled.

opremljen, angažiran, osnažen, osposobljen.

Obviously, at this stage of life

Očito je u ovoj fazi života

he was in a somewhat more dignified form than he was back then.

bio u dostojanstvenijem stanju nego tada.

Now, I was an engaged patient long before I ever heard of the term.

Ja sam bio angažirani pacijent

prije nego što sam čuo za taj termin.

In 2006, I went to my doctor for a regular physical,

2006. sam otišao liječniku na redoviti pregled

and I had said, "I have a sore shoulder."

i rekao da me boli rame.

Poslao me na snimanje

Well, I got an X-ray,

and the next morning --

i sljedeće jutro --

you may have noticed, those of you who have been through a medical crisis

možda ste primijetili, oni koji su prošli medicinsku krizu

shvatit će.

will understand this.

To jutro, neki govornici

This morning, some of the speakers named the date when they found out

naveli su datum kada su doznali za svoje stanje.

about their condition.

For me, it was 9am

Za mene to je bilo 9:00 h

on January 3, 2007.

3. siječnja 2007.

Bio sam u uredu. Moj radni stol je bio uredan.

I was at the office; my desk was clean.

Imao sam plavi pregradni tepih na zidovima.

I had the blue partition carpet on the walls.

Telefon je zazvonio. Moj liječnik.

The phone rang and it was my doctor.

Rekao je: "Pogledao sam rendgensku snimku

He said, "Dave, I pulled up the X-ray image

na ekranu svog računala kod kuće."

on the screen on the computer at home."

Rekao je: "Tvoje rame će biti u redu,

He said, "Your shoulder is going to be fine,

ali imaš nešto u plućnom krilu."

but Dave, there's something in your lung."

Pogledajte crvenu elipsu,

And if you look in that red oval,

sjena nije trebala biti ondje.

that shadow was not supposed to be there.

Da skratim priču,

To make a long story short,

rekao sam: "Trebam doći u bolnicu?"

I said, "So you need me to get back in there?"

Rekao je: "Da, morat ćemo napraviti CT prsnog koša."

He said, "Yeah, we're going to need to do a CT scan of your chest."

Pri pozdravljanju sam rekao: "Trebam li što učiniti?"

In parting, I said, "Is there anything I should do?"

Rekao je -- razmislite o ovome.

He said -- think about this one,

Ovo je savjet koji ćete dobiti od liječnika.

this is the advice your doctor gives you:

"Idite kući i popijte čašu vina sa suprugom."

"Just go home and have a glass of wine with your wife."

Otišao sam na CAT snimanje

I went in for the CAT scan.

It turns out there were five of these things in both my lungs.

i otkrili su da ih je pet u oba plućna krila.

So at that point we knew that it was cancer.

Tada smo shvatili da se radi o raku.

We knew it wasn't lung cancer.

Znali smo da nije rak pluća.

That meant it was metastasized from somewhere.

Što znači da je metastazirao odnekuda.

Pitanje je bilo otkuda.

The question was, where from?

So I went in for an ultrasound.

Otišao sam na ultrazvuk.

Imao sam priliku isprobati što i većina žena --

I got to do what many women have --

the jelly on the belly and the, "Bzzzz!"

gel na trbuhu i bzzzz.

Supruga je išla sa mnom.

My wife came with me.

Ona je veterinarka,

She's a veterinarian,

so she's seen lots of ultrasounds.

vidjela je mnogo ultrazvučnih pregleda.

I mean, she knows I'm not a dog.

Mislim, jasno joj je da nisam pas.

(Laughter)

This is an MRI image.

Ono što smo vidjeli -- ovo je MRI snimka.

This is much sharper than an ultrasound would be.

Mnogo je oštrija od ultrazvuka.

U bubregu smo vidjeli

What we saw in that kidney

ovu veliku nakupinu ovdje.

was that big blob there.

Zapravo dvije.

There were actually two of these: one was growing out the front

Jedna je rasla sprijeda,

and had already erupted and latched onto the bowel.

već je buknula i uhvatila se za crijevo,

jedna sa stražnje strane i pričvrstila se za listoliki mišić,

One was growing out the back and it attached to the psoas muscle,

veliki mišić u leđima za koji nikad nisam čuo,

which is a big muscle in the back that I'd never heard of,

no odjednom mi je postao važan.

but all of a sudden I cared about it.

(Laughter)

Otišao sam kući.

I went home.

Now, I've been Googling --

Pretraživao sam internet pomoću Googlea, koristim internet od 1989.

I've been online since 1989, on CompuServe.

Otišao sam kući. Znam da ne vidite sve;

I went home, and I know you can't read the details here;

nije važno.

that's not important.

My point is, I went to a respected medical website, WebMD,

Posjetio sam jednu cijenjenu medicinsku stranicu,

WebMD,

jer znam kako odvojiti nebitno.

because I know how to filter out junk.

I also found my wife online.

I ženu sam pronašao na internetu.

Before I met her,

Prije nego sam je upoznao,

I went through some suboptimal search results.

isprobao sam neke lošije rezultate pretrage.

(Smijeh)

(Laughter)

So I looked for quality information.

Tražio sam kvalitetne informacije.

There's so much about trust --

Povjerenje je iznimno važno --

what sources of information can we trust?

kojim izvorima možemo vjerovati?

Gdje prestaje moje tijelo

Where does my body end and an invader start?

i počinje uljez?

A cancer, a tumor, is something you grow out of your own tissue.

Rak, odnosno tumor, razvija se iz vašeg vlastitog tkiva.

Kako se to događa?

How does that happen?

Where does medical ability end and start?

Gdje moć medicine

prestaje i započinje?

Well, so what I read on WebMD:

Na WebMD-u sam pročitao:

"Prognoza je veoma loša

"The prognosis is poor for progressing renal cell cancer.

za progresivni rak bubrežnih stanica.

Gotovo su svi pacijenti neizlječivi."

Almost all patients are incurable."

Koristim se internetom dovoljno dugo

I've been online long enough to know if I don't like the first results I get,

i ako mi se ne svide prvi rezultati

nastavljam tražiti.

I go look for more.

And what I found on other websites was,

Ono što sam našao bilo je na drugim stranicama,

even by the third page of Google results:

čak na trećoj stranici rezultata na Googleu:

"Outlook is bleak."

"Izgledi su slabi."

"Prognosis is grim."

"Prognoza je nepovoljna."

Razmišljao sam: "Baš me briga!"

And I'm thinking, "What the heck?"

Nisam se osjećao bolesno.

I didn't feel sick at all.

Navečer bih postao umoran,

I mean, I'd been getting tired in the evening,

ali imao sam 56 godina.

but I was 56 years old, you know?

Polako sam mršavio,

I was slowly losing weight,

no liječnik mi je rekao da trebam smršaviti.

but for me, that was what the doctor told me to do.

Bila je to velika stvar.

It was really something.

And this is the diagram of stage 4 kidney cancer

Ovo je prikaz četvrtog stadija raka bubrega

od lijeka koji sam na kraju dobio.

from the drug I eventually got.

Totally by coincidence, there's that thing in my lung.

Slučajno se ta stvar nalazi u mom plućnom krilu.

U lijevoj bedrenoj kosti nalazi se još jedna.

In the left femur, the left thigh bone, there's another one.

Ja sam imao jednu. Noga mi je otkazala.

I had one. My leg eventually snapped.

Onesvijestio sam se, pao na nju i slomio je.

I fainted and landed on it, and it broke.

Jedna se nalazi u lubanji,

There's one in the skull,

and then for good measure, I had these other tumors,

kao da to nije dovoljno, imao sam još tumora --

uključujući, dok je liječenje započelo,

including, by the time my treatment started,

jedan koji se razvijao iz jezika.

one was growing out of my tongue.

I had kidney cancer growing out of my tongue.

Rak bubrega razvijao mi se iz jezika.

And what I read

Pročitao sam da su mi preostala

was that my median survival was 24 weeks.

u prosjeku 24 tjedna.

To je bilo loše.

This was bad.

I was facing the grave.

Gledao sam smrti u oči.

I thought, "What's my mother's face going to look like

Razmišljao sam: "Kako će moja majka izgledati

on the day of my funeral?"

na dan mog pogreba?"

I had to sit down with my daughter and say, "Here's the situation."

Morao sam sjesti sa svojom kćeri

i reći: "Ovako stvari stoje."

Njezin je dečko bio s njom.

Her boyfriend was with her.

I said, "I don't want you guys to get married prematurely,

Rekao sam: "Ne želim da se prerano vjenčate

just so you can do it while Dad's still alive."

samo zato da tata može biti na vjenčanju."

Ozbiljno je.

It's really serious.

If you wonder why patients are motivated and want to help,

Ako se pitate zašto su pacijenti motivirani

i žele pomoći, razmislite o ovome.

think about this.

Well, my doctor prescribed a patient community, ACOR.org,

Liječnik mi je preporučio zajednicu pacijenata,

Acor.org,

a network of cancer patients, of all amazing things.

mrežu pacijenata s rakom, od svih divnih stvari.

Ubrzo su mi rekli:

Very quickly they told me,

"Rak bubrega je rijetka bolest.

"Kidney cancer is an uncommon disease.

Nađi si specijalistički centar.

Get yourself to a specialist center.

Lijeka nema, no postoji nešto što ponekad pomogne --

There is no cure, but there's something that sometimes works --

obično ne --

it usually doesn't --

called high-dosage interleukin.

visoka doza interleukina.

Most hospitals don't offer it,

Većina ga bolnica ne nudi

so they won't even tell you it exists.

pa vam čak neće ni reći da postoji.

Don't let them give you anything else first.

Ne dopustite da vam daju nešto drugo prije.

And by the way, here are four doctors in your part of the United States

Kad smo kod toga, ovo su četiri liječnika

u vašem dijelu SAD-a koji ga nude i njihovi brojevi."

who offer it, and their phone numbers."

Zar to nije izvanredno?

How amazing is that?

(Pljesak)

(Applause)

Evo u čemu je stvar.

Here's the thing:

Here we are, four years later --

I sada, četiri godine kasnije

you can't find a website that gives patients that information.

ne postoji stranica koja pacijentima nudi tu informaciju.

Government-approved, American Cancer Society,

Vlada ga je odobrila kao i Američko društvo za karcinome,

but patients know what patients want to know.

no pacijenti saznaju ono što žele.

To je moć mreža pacijenata.

It's the power of patient networks.

This amazing substance -- again, I mentioned:

Ova nevjerojatna materija --

ponavljam, gdje moje tijelo završava?

Where does my body end?

My oncologist and I talk a lot these days

Moj onkolog i ja mnogo smo razgovarali

because I try to keep my talks technically accurate.

jer sam želio da moji govori budu precizni.

Rekao je: "Znate, imunološki sustav

And he said, "You know, the immune system is good at detecting invaders,

je dobar u otkrivanju uljeza --

bakterija koje dolaze izvana --

bacteria coming from outside,

but when it's your own tissue that you've grown,

no kada nastaje vaše vlastito tkivo

to je potpuno druga stvar."

it's a whole different thing."

And I went through a mental exercise, actually,

Prošao sam mentalni trening

because I started a patient support community of my own on a website,

jer sam osnovao zajednicu za potporu pacijentima

na internetu

and one of my friends -- one of my relatives, actually -- said,

i jedan prijatelj, odnosno rođak

rekao je: "Dave, tko je proizveo tu stvar?

"Look, Dave, who grew this thing?

Možeš li odlučiti

Are you going to set yourself up as mentally attacking yourself?"

sam sebe mentalno napasti?"

Upustili smo se u to.

So we went into it.

The story of how all that happened is in the book.

Cijela se priča nalazi u ovoj knjizi.

Anyway, this is the way the numbers unfolded.

Uglavnom, brojevi su se ovako razvijali.

Unio sam brojeve s bolničke web stranice,

Me being me, I put the numbers from my hospital's website,

veličine svojih tumora, u tablicu.

for my tumor sizes,

into a spreadsheet.

Brojevi nisu važni.

Don't worry about the numbers.

Ovo je imunološki sustav.

You see, that's the immune system.

Amazing thing, those two yellow lines

Nevjerojatna stvar, dvije žute linije

are where I got the two doses of interleukin two months apart.

označavaju kada sam dobio doze interleukina

u razmaku od dva mjeseca.

Pogledajte kako su se tumori smanjili u međuvremenu.

And look at how the tumor sizes plummeted in between.

Nevjerojatno.

Just incredible.

Who knows what we'll be able to do when we learn to make more use of it?

Tko zna što ćemo sve moći kad ga naučimo bolje koristiti.

Poanta je da sam godinu i pol kasnije

The punch line is that a year and a half later,

I was there when this magnificent young woman, my daughter,

bio prisutan kada se ova divna mlada dama, moja kći,

udala.

got married.

And when she came down those steps,

Kada se spustila niz stube

and it was just her and me for that moment,

te smo ostali nasamo na trenutak

I was so glad that she didn't have to say to her mother,

bio sam presretan što nije morala reći majci:

"I wish Dad could have been here."

"Da je barem tata mogao biti ovdje."

And this is what we're doing when we make health care better.

To je ono što želimo postići

unapređivanjem zdravstvene skrbi.

Now, I want to talk briefly about a couple of other patients

Ukratko želim spomenuti nekoliko pacijenata

who are doing everything in their power to improve health care.

koji daju sve od sebe da bi poboljšali zdravstvenu skrb.

This is Regina Holliday,

Ovo je Regina Holliday,

a painter in Washington DC, whose husband died of kidney cancer

slikarica u Washingtonu

čiji je muž preminuo od raka godinu dana nakon moje bolesti.

a year after my disease.

Ovdje slika zidnu sliku

She's painting, here, a mural

užasnih posljednjih tjedana u bolnici.

of his horrible final weeks in the hospital.

Između ostalog je otkrila

One of the things that she discovered

da je karton njezina muža

was that her husband's medical record in this paper folder

u ovom fasciklu

bio dezorganiziran.

was just disorganized.

Pomislila je: "Imamo naljepnice s nutritivnim tablicama

And she thought, "You know, if I have a nutrition facts label

na kutiji žitarica.

on the side of a cereal box,

Zašto ne postoji nešto tako jednostavno

why can't there be something that simple

što će svakoj sestri,

telling every new nurse who comes on duty,

svakom novom doktoru,

every new doctor,

pružiti osnove o stanju mog muža?

the basics about my husband's condition?"

Naslikala je medicinske podatke

So she painted this medical facts mural with a nutrition label,

s nutritivnom tablicom

ili nečim sličnim

something like that,

unutar crteža svog muža.

in a diagram of him.

Prošle je godine naslikala ovu sliku.

She then, last year, painted this diagram.

Proučavala je zdravstvo kao i ja.

She studied health care like me.

She came to realize there were a lot of people

Shvatila je da postoji mnogo ljudi

koji pišu knjige podrške pacijentima

who'd written patient-advocate books

za koje nećete čuti na medicinskim konferencijama.

that you just don't hear about at medical conferences.

Pacijenti su premalo korišten resurs.

Patients are such an underutilized resource.

Well, as it said in my introduction,

Kao što piše u mom uvodu,

I've gotten somewhat known for saying

postao sam poznat jer tvrdim da treba omogućiti pristup podacima.

that patients should have access to their data.

Rekao sam na konferenciji prije nekoliko godina:

I actually said at one conference a couple of years ago,

"Dajte mi vražje podatke

"Give me my damn data,

because you people can't be trusted to keep it clean."

jer vam se ne može vjerovati da ćete ih čuvati."

And here, she has our "damned" data --

Ovo su naši ograđeni podaci --

igra riječi --

it's a pun --

which is starting to break out, starting to break through --

koji počinju probijati branu --

voda simbolizira naše podatke.

the water symbolizes our data.

And in fact,

Želim vam ovdje izvesti jednu improvizaciju.

I want to do a little something improvisational for you.

Znam jednog tipa na Twitteru,

There's a guy on Twitter that I know, a health IT guy outside Boston,

IT stručnjaka blizu Bostona

koji je napisao rap o e-pacijentu

and he wrote the e-Patient rap.

And it goes like this.

koji ide ovako:

(Laughter)

(Beatboxing)

(Rapping) Gimme my damn data

♫ Daj mi moje podatke ♫

I wanna be an e-Patient just like Dave

♫ Želim biti e-pacijent kao Dave ♫

Gimme my damn data, 'cause it's my life to save

♫ Daj mi podatke jer radi se o mom životu ♫

(Normal voice) Now, I'm not going to go any further --

Neću ići dalje.

(Applause) (Cheering)

(Pljesak)

Hvala vam. Ovo mi je skratilo vrijeme.

Well, thank you. That shot the timing.

(Laughter)

(Smijeh)

Think about the possibility.

Razmislite o mogućnosti,

Why is it that iPhones and iPads advance far faster

zašto iPhonei i iPadi

napreduju toliko brže

than the health tools that are available to you

od dostupnih zdravstvenih pomagala

to help take care of your family?

koji vam pomažu u skrbi za obitelj?

Here's a website, VisibleBody.com, that I stumbled across.

Ovo je stranica, VisibleBody.com,

na koju sam naletio.

And I thought, "You know, I wonder what my psoas muscle is?"

Pomislio sam: "Pitam se što je taj listoliki mišić?"

So you can click on things and remove it.

Možete kliknuti na stvari i ukloniti ih.

And I saw, "Aha! That's the kidney and the psoas muscle."

Vidio sam: "To je bubreg i listoliki mišić."

I was rotating it in 3D and saying, "I understand now."

Okretao sam ga u 3D prikazu

govoreći: "Sada razumijem."

And then I realized it reminded me of Google Earth,

Tad sam shvatio da me podsjeća na Google Earth

where you can fly to any address.

s kojim možete otići na bilo koju adresu.

And I thought, "Why not take this and connect it to my digital scan data

"Zašto ne bih uzeo ovo,

spojio to na moje podatke sa snimanja

and have Google Earth for my body?"

i dobio Google Earth svog tijela?"

What did Google come out with this year?

Što je Google pokrenuo ove godine?

Preglednik Google Body.

Now there's Google Body browser.

But you see, it's still generic.

No još uvijek je općenit.

It's not my data.

To nisu moji podaci.

But if we can get that data out from behind the dam

No ako možemo srušiti branu i izvući podatke

so software innovators can pounce on it

pa da se softverski inovatori mogu baciti na njih

the way software innovators like to do,

kao što oni vole raditi,

who knows what we'll be able to come up with.

tko zna do čega ćemo sve doći.

Posljednja priča: ovo je Kelly Young,

One final story.

This is Kelly Young, a rheumatoid arthritis patient from Florida.

boluje od reumatoidnog artritisa

i živi na Floridi.

Ovo je aktualna priča

This is a live story, unfolding just in the last few weeks.

koja se događa zadnjih nekoliko tjedana.

RA patients, as they call themselves -- her blog is "RA Warrior" --

RA pacijenti, kako sami sebe zovu --

njezin blog je RA Ratnica --

imaju velik problem

have a big problem,

because 40 percent of them have no visible symptoms.

jer 40 posto njih nema vidljive simptome

zbog čega je iznimno teško pratiti kako bolest napreduje.

And that makes it really hard to tell how the disease is going,

Neki liječnici misle: "Ma da, stvarno trpite bol."

and some doctors think, "Yeah right, you're really in pain."

Istraživanjem na internetu otkrila je

Well, she found, through her online research,

nuklearno snimanje kostiju

a nuclear bone scan that's usually used for cancer,

koje se obično koristi kod raka,

but it can also reveal inflammation.

no može otkriti i upalu.

Vidjela je

And she saw that if there is no inflammation,

da ako nema upale

snimka je jednolično siva.

then the scan is a uniform gray.

So she took it.

Otišla je na snimanje.

And the radiologist's report said, "No cancer found."

Izvješće radiologa otkrilo je da nema rak.

No ta informacija joj nije trebala.

Well, that's not what he was supposed to do with it.

Tražila je da ga ponovno prouči

So she wanted to have it read again,

te ju je liječnik otpustio.

and her doctor fired her.

Pokrenula je CD.

She pulled up the CD.

He said, "If you don't want to follow my instructions, go away."

Rekao je: "Ako ne želite slijediti moje upute,

idite."

Pokrenula je CD sa snimkama skeniranja

So she pulled up the CD of the scan images,

pogledajte ta upaljena područja.

and look at all those hot spots.

Sada je aktivno angažirana na svom blogu

And she's now actively engaged on her blog

i traži pomoć kako bi dobila bolju skrb.

in looking for assistance in getting better care.

To je osnažen pacijent -- bez medicinske obuke.

See, that is an empowered patient -- no medical training.

Mi smo, vi ste

We are, you are,

najmanje korišten resurs u zdravstvu.

the most underused resource in health care.

What she was able to do

Mogla je to napraviti

was because she had access to the raw data.

jer je imala pristup neobrađenim podacima.

Zamislite!

How big a deal was this?

Well at TED2009,

Na TED-u 2009.

Tim Berners-Lee himself, inventor of the Web,

Tim Berners-Lee, izumitelj weba, rekao je

gave a talk where he said the next big thing

da je sljedeći veliki korak

is not to have your browser find other people's articles about the data,

ne da preglednik pretražuje

članke drugih ljudi o podacima,

već neobrađene podatke.

but the raw data.

And he got them chanting by the end of the talk,

Do kraja govora publika je skandirala:

"Neobrađeni podaci.

"Raw data now! Raw data now!"

Neobrađeni podaci."

Ja vas molim

And I ask you,

three words, please, to improve health care:

za tri riječi da bismo poboljšali zdravstvo:

Let patients help!

nek' pacijenti pomognu.

Let patients help!

Nek' pacijenti pomognu.

Let patients help!

Nek' pacijenti pomognu.

Let patients help!

Nek' pacijenti pomognu.

Thank you.

Hvala.

(Applause)

(Pljesak)

For all the patients around the world watching this on the Webcast,

Svim pacijentima diljem svijeta

koji gledaju ovo putem interneta:

God bless you, everyone. Let patients help.

Bog vas blagoslovio -- nek' pacijenti pomognu.

Voditelj: Vas također. Hvala Vam.

Host: And bless yourself. Thank you very much.