It's an amazing thing that we're here to talk about the year of patients rising. You heard stories earlier today about patients who are taking control of their cases, patients who are saying, "You know what, I know what the odds are, but I'm going to look for more information. I'm going to define what the terms of my success are." I'm going to be sharing with you how, four years ago, I almost died -- found out I was, in fact, already almost dead -- and what I then found out about what's called the e-Patient movement. I'll explain what that term means. I had been blogging under the name "Patient Dave," and when I discovered this, I just renamed myself e-Patient Dave.
Nevjerojatno, ovdje smo da bismo govorili o godini jačanja uloge pacijenata. Ranije danas čuli ste priče o pacijentima koji preuzimaju kontrolu nad slučajevima, koji govore: "Svjestan sam kolike su šanse, ali potražit ću dodatne informacije. Ja ću utvrditi uvjete potrebne da uspijem." Podijelit ću s vama kako sam prije četiri godine gotovo umro -- doznao da sam zapravo već gotovo mrtav te kako sam saznao za tzv. pokret e-pacijenata -- objasnit ću taj pojam. Pisao sam blog pod imenom Pacijent Dave, no kada sam otkrio ovo, promijenio sam ime u e-pacijent Dave.
Regarding the word "patient": When I first started a few years ago getting involved in health care and attending meetings as just a casual observer, I noticed that people would talk about patients as if it was somebody who's not in the room here -- somebody out there. Some of our talks today, we still act like that. But I'm here to tell you: "patient" is not a third-person word. All right? You yourself will find yourself in a hospital bed -- or your mother, your child -- there are heads nodding, people who say, "Yes, I know exactly what you mean."
Što se tiče riječi "pacijent", kada sam se prije nekoliko godina uključio u zdravstvenu skrb i počeo prisustvovati sastancima kao promatrač, primijetio sam da ljudi govore o pacijentima kao o nekome tko se ne nalazi u prostoriji, nekome tko je negdje daleko. I u nekim govorima danas ponašamo se tako. Ja sam ovdje da vas uvjerim, "pacijent" nije neka treća osoba. Vi sami naći ćete se u bolničkom krevetu -- ili vaša majka, vaše dijete -- vidim kimanje glavama, ljudi govore: "Znam o čemu govoriš." Kada čujete o čemu ću govoriti danas,
So when you hear what I'm going to talk about here today, first of all, I want to say that I am here on behalf of all the patients that I have ever met, all the ones I haven't met. This is about letting patients play a more active role in helping health care, in fixing health care. One of the senior doctors at my hospital, Charlie Safran, and his colleague, Warner Slack, have been saying for decades that the most underutilized resource in all of health care is the patient. They have been saying that since the 1970s.
prije svega želim reći da sam ovdje u ime svih pacijenata koje sam upoznao, i onih koje nisam upoznao. Želim da se pacijenti aktivnije uključe u popravljanje zdravstvene skrbi. Jedan od iskusnijih liječnika u mojoj bolnici, Charlie Safran, i njegov kolega Warner Slack već desetljećima govore da je najmanje korišten resurs u zdravstvu pacijent. To govore još od 1970-ih.
Now, I'm going to step back in history. This is from July, 1969. I was a freshman in college, and this was when we first landed on the Moon. And it was the first time we had ever seen from another surface -- that's the place where you and I are right now, where we live. The world was changing. It was about to change in ways that nobody could foresee. A few weeks later, Woodstock happened. Three days of fun and music. Here, just for historical authenticity, is a picture of me in that year.
Sada ću se vratiti u prošlost. U srpanj 1969. Bio sam brucoš na fakultetu kada smo prvi put sletjeli na Mjesec. Prvi smo put s druge površine vidjeli -- mjesto na kojemu smo upravo sad, na kojemu živimo. Svijet se mijenjao. Slijedile su promjene koje nitko nije mogao predvidjeti. Nekoliko tjedana kasnije dogodio se Woodstock. Tri dana zabave i glazbe. Isključivo radi povijesne vjerodostojnosti ovo sam ja te godine.
(Laughter)
(Smijeh)
Yeah, the wavy hair, the blue eyes -- it was really something.
Da, valovita kosa, plave oči -- to je bilo nešto posebno.
That fall of 1969, the Whole Earth Catalog came out. It was a hippie journal of self-sufficiency. We think of hippies of being just hedonists, but there's a very strong component -- I was in that movement -- a very strong component of being responsible for yourself. This book's title's subtitle is "Access to Tools." It talked about how to build your own house, how to grow your own food, all kinds of things. In the 1980s, this young doctor, Tom Ferguson, was the medical editor of the Whole Earth Catalog. He saw that the great majority of what we do in medicine and health care is taking care of ourselves. In fact, he said it was 70 to 80 percent of how we actually take care of our bodies. Well, he also saw that when health care turns to medical care because of a more serious disease, the key thing that holds us back is access to information. And when the Web came along, that changed everything, because not only could we find information, we could find other people like ourselves who could gather, who could bring us information. And he coined this term "e-Patients" -- equipped, engaged, empowered, enabled. Obviously, at this stage of life he was in a somewhat more dignified form than he was back then.
Te jeseni 1969. izašao je Katalog cijele Zemlje. Bio je to hipijevski časopis samodostatnosti. Mislimo da su hipiji samo hedonisti, no postoji snažan element, bio sam u tom pokretu, veoma snažan element odgovornosti za samoga sebe. Podnaslov ove knjige je "Pristup alatima". Objašnjava kako sagraditi vlastitu kuću, uzgajati vlastitu hranu, razne stvari. U 1980-ima ovaj liječnik, Tom Ferguson, bio je medicinski urednik Kataloga cijele Zemlje. Shvatio je da većinu onoga što radimo u medicini i zdravstvu čini briga za nas same. Rekao je da se radi o 70 do 80 posto od toga koliko se stvarno brinemo za svoje tijelo. Također je shvatio da kada zdravstvena skrb postane medicinska zbog ozbiljnije bolesti ključni čimbenik koji nas koči je pristup informacijama. Pojava interneta sve je promjenila. Ne samo da smo mogli naći informacije, nego i ljude slične nama koji mogu sakupiti i pružiti nam informacije. On je skovao termin e-pacijent -- opremljen, angažiran, osnažen, osposobljen. Očito je u ovoj fazi života bio u dostojanstvenijem stanju nego tada.
Now, I was an engaged patient long before I ever heard of the term. In 2006, I went to my doctor for a regular physical, and I had said, "I have a sore shoulder." Well, I got an X-ray, and the next morning -- you may have noticed, those of you who have been through a medical crisis will understand this. This morning, some of the speakers named the date when they found out about their condition. For me, it was 9am on January 3, 2007. I was at the office; my desk was clean. I had the blue partition carpet on the walls. The phone rang and it was my doctor. He said, "Dave, I pulled up the X-ray image on the screen on the computer at home." He said, "Your shoulder is going to be fine, but Dave, there's something in your lung." And if you look in that red oval, that shadow was not supposed to be there. To make a long story short, I said, "So you need me to get back in there?" He said, "Yeah, we're going to need to do a CT scan of your chest." In parting, I said, "Is there anything I should do?" He said -- think about this one, this is the advice your doctor gives you: "Just go home and have a glass of wine with your wife."
Ja sam bio angažirani pacijent prije nego što sam čuo za taj termin. 2006. sam otišao liječniku na redoviti pregled i rekao da me boli rame. Poslao me na snimanje i sljedeće jutro -- možda ste primijetili, oni koji su prošli medicinsku krizu shvatit će. To jutro, neki govornici naveli su datum kada su doznali za svoje stanje. Za mene to je bilo 9:00 h 3. siječnja 2007. Bio sam u uredu. Moj radni stol je bio uredan. Imao sam plavi pregradni tepih na zidovima. Telefon je zazvonio. Moj liječnik. Rekao je: "Pogledao sam rendgensku snimku na ekranu svog računala kod kuće." Rekao je: "Tvoje rame će biti u redu, ali imaš nešto u plućnom krilu." Pogledajte crvenu elipsu, sjena nije trebala biti ondje. Da skratim priču, rekao sam: "Trebam doći u bolnicu?" Rekao je: "Da, morat ćemo napraviti CT prsnog koša." Pri pozdravljanju sam rekao: "Trebam li što učiniti?" Rekao je -- razmislite o ovome. Ovo je savjet koji ćete dobiti od liječnika. "Idite kući i popijte čašu vina sa suprugom."
I went in for the CAT scan. It turns out there were five of these things in both my lungs. So at that point we knew that it was cancer. We knew it wasn't lung cancer. That meant it was metastasized from somewhere. The question was, where from? So I went in for an ultrasound. I got to do what many women have -- the jelly on the belly and the, "Bzzzz!" My wife came with me. She's a veterinarian, so she's seen lots of ultrasounds. I mean, she knows I'm not a dog.
Otišao sam na CAT snimanje i otkrili su da ih je pet u oba plućna krila. Tada smo shvatili da se radi o raku. Znali smo da nije rak pluća. Što znači da je metastazirao odnekuda. Pitanje je bilo otkuda. Otišao sam na ultrazvuk. Imao sam priliku isprobati što i većina žena -- gel na trbuhu i bzzzz. Supruga je išla sa mnom. Ona je veterinarka, vidjela je mnogo ultrazvučnih pregleda. Mislim, jasno joj je da nisam pas.
(Laughter)
Ono što smo vidjeli -- ovo je MRI snimka.
This is an MRI image. This is much sharper than an ultrasound would be. What we saw in that kidney was that big blob there. There were actually two of these: one was growing out the front and had already erupted and latched onto the bowel. One was growing out the back and it attached to the psoas muscle, which is a big muscle in the back that I'd never heard of, but all of a sudden I cared about it.
Mnogo je oštrija od ultrazvuka. U bubregu smo vidjeli ovu veliku nakupinu ovdje. Zapravo dvije. Jedna je rasla sprijeda, već je buknula i uhvatila se za crijevo, jedna sa stražnje strane i pričvrstila se za listoliki mišić, veliki mišić u leđima za koji nikad nisam čuo, no odjednom mi je postao važan.
(Laughter)
Otišao sam kući.
I went home.
Pretraživao sam internet pomoću Googlea, koristim internet od 1989.
Now, I've been Googling -- I've been online since 1989, on CompuServe. I went home, and I know you can't read the details here; that's not important. My point is, I went to a respected medical website, WebMD, because I know how to filter out junk. I also found my wife online. Before I met her, I went through some suboptimal search results.
Otišao sam kući. Znam da ne vidite sve; nije važno. Posjetio sam jednu cijenjenu medicinsku stranicu, WebMD, jer znam kako odvojiti nebitno. I ženu sam pronašao na internetu. Prije nego sam je upoznao, isprobao sam neke lošije rezultate pretrage.
(Laughter)
(Smijeh)
So I looked for quality information. There's so much about trust -- what sources of information can we trust? Where does my body end and an invader start? A cancer, a tumor, is something you grow out of your own tissue. How does that happen? Where does medical ability end and start? Well, so what I read on WebMD: "The prognosis is poor for progressing renal cell cancer. Almost all patients are incurable." I've been online long enough to know if I don't like the first results I get, I go look for more. And what I found on other websites was, even by the third page of Google results: "Outlook is bleak." "Prognosis is grim." And I'm thinking, "What the heck?" I didn't feel sick at all. I mean, I'd been getting tired in the evening, but I was 56 years old, you know? I was slowly losing weight, but for me, that was what the doctor told me to do. It was really something.
Tražio sam kvalitetne informacije. Povjerenje je iznimno važno -- kojim izvorima možemo vjerovati? Gdje prestaje moje tijelo i počinje uljez? Rak, odnosno tumor, razvija se iz vašeg vlastitog tkiva. Kako se to događa? Gdje moć medicine prestaje i započinje? Na WebMD-u sam pročitao: "Prognoza je veoma loša za progresivni rak bubrežnih stanica. Gotovo su svi pacijenti neizlječivi." Koristim se internetom dovoljno dugo i ako mi se ne svide prvi rezultati nastavljam tražiti. Ono što sam našao bilo je na drugim stranicama, čak na trećoj stranici rezultata na Googleu: "Izgledi su slabi." "Prognoza je nepovoljna." Razmišljao sam: "Baš me briga!" Nisam se osjećao bolesno. Navečer bih postao umoran, ali imao sam 56 godina. Polako sam mršavio, no liječnik mi je rekao da trebam smršaviti. Bila je to velika stvar.
And this is the diagram of stage 4 kidney cancer from the drug I eventually got. Totally by coincidence, there's that thing in my lung. In the left femur, the left thigh bone, there's another one. I had one. My leg eventually snapped. I fainted and landed on it, and it broke. There's one in the skull, and then for good measure, I had these other tumors, including, by the time my treatment started, one was growing out of my tongue. I had kidney cancer growing out of my tongue. And what I read was that my median survival was 24 weeks. This was bad. I was facing the grave. I thought, "What's my mother's face going to look like on the day of my funeral?" I had to sit down with my daughter and say, "Here's the situation." Her boyfriend was with her. I said, "I don't want you guys to get married prematurely, just so you can do it while Dad's still alive." It's really serious. If you wonder why patients are motivated and want to help, think about this.
Ovo je prikaz četvrtog stadija raka bubrega od lijeka koji sam na kraju dobio. Slučajno se ta stvar nalazi u mom plućnom krilu. U lijevoj bedrenoj kosti nalazi se još jedna. Ja sam imao jednu. Noga mi je otkazala. Onesvijestio sam se, pao na nju i slomio je. Jedna se nalazi u lubanji, kao da to nije dovoljno, imao sam još tumora -- uključujući, dok je liječenje započelo, jedan koji se razvijao iz jezika. Rak bubrega razvijao mi se iz jezika. Pročitao sam da su mi preostala u prosjeku 24 tjedna. To je bilo loše. Gledao sam smrti u oči. Razmišljao sam: "Kako će moja majka izgledati na dan mog pogreba?" Morao sam sjesti sa svojom kćeri i reći: "Ovako stvari stoje." Njezin je dečko bio s njom. Rekao sam: "Ne želim da se prerano vjenčate samo zato da tata može biti na vjenčanju." Ozbiljno je. Ako se pitate zašto su pacijenti motivirani i žele pomoći, razmislite o ovome.
Well, my doctor prescribed a patient community, ACOR.org, a network of cancer patients, of all amazing things. Very quickly they told me, "Kidney cancer is an uncommon disease. Get yourself to a specialist center. There is no cure, but there's something that sometimes works -- it usually doesn't -- called high-dosage interleukin. Most hospitals don't offer it, so they won't even tell you it exists. Don't let them give you anything else first. And by the way, here are four doctors in your part of the United States who offer it, and their phone numbers." How amazing is that?
Liječnik mi je preporučio zajednicu pacijenata, Acor.org, mrežu pacijenata s rakom, od svih divnih stvari. Ubrzo su mi rekli: "Rak bubrega je rijetka bolest. Nađi si specijalistički centar. Lijeka nema, no postoji nešto što ponekad pomogne -- obično ne -- visoka doza interleukina. Većina ga bolnica ne nudi pa vam čak neće ni reći da postoji. Ne dopustite da vam daju nešto drugo prije. Kad smo kod toga, ovo su četiri liječnika u vašem dijelu SAD-a koji ga nude i njihovi brojevi." Zar to nije izvanredno?
(Applause)
(Pljesak)
Here's the thing: Here we are, four years later -- you can't find a website that gives patients that information. Government-approved, American Cancer Society, but patients know what patients want to know. It's the power of patient networks. This amazing substance -- again, I mentioned: Where does my body end? My oncologist and I talk a lot these days because I try to keep my talks technically accurate. And he said, "You know, the immune system is good at detecting invaders, bacteria coming from outside, but when it's your own tissue that you've grown, it's a whole different thing." And I went through a mental exercise, actually, because I started a patient support community of my own on a website, and one of my friends -- one of my relatives, actually -- said, "Look, Dave, who grew this thing? Are you going to set yourself up as mentally attacking yourself?" So we went into it. The story of how all that happened is in the book.
Evo u čemu je stvar. I sada, četiri godine kasnije ne postoji stranica koja pacijentima nudi tu informaciju. Vlada ga je odobrila kao i Američko društvo za karcinome, no pacijenti saznaju ono što žele. To je moć mreža pacijenata. Ova nevjerojatna materija -- ponavljam, gdje moje tijelo završava? Moj onkolog i ja mnogo smo razgovarali jer sam želio da moji govori budu precizni. Rekao je: "Znate, imunološki sustav je dobar u otkrivanju uljeza -- bakterija koje dolaze izvana -- no kada nastaje vaše vlastito tkivo to je potpuno druga stvar." Prošao sam mentalni trening jer sam osnovao zajednicu za potporu pacijentima na internetu i jedan prijatelj, odnosno rođak rekao je: "Dave, tko je proizveo tu stvar? Možeš li odlučiti sam sebe mentalno napasti?" Upustili smo se u to. Cijela se priča nalazi u ovoj knjizi.
Anyway, this is the way the numbers unfolded. Me being me, I put the numbers from my hospital's website, for my tumor sizes, into a spreadsheet. Don't worry about the numbers. You see, that's the immune system. Amazing thing, those two yellow lines are where I got the two doses of interleukin two months apart. And look at how the tumor sizes plummeted in between. Just incredible. Who knows what we'll be able to do when we learn to make more use of it?
Uglavnom, brojevi su se ovako razvijali. Unio sam brojeve s bolničke web stranice, veličine svojih tumora, u tablicu. Brojevi nisu važni. Ovo je imunološki sustav. Nevjerojatna stvar, dvije žute linije označavaju kada sam dobio doze interleukina u razmaku od dva mjeseca. Pogledajte kako su se tumori smanjili u međuvremenu. Nevjerojatno. Tko zna što ćemo sve moći kad ga naučimo bolje koristiti.
The punch line is that a year and a half later, I was there when this magnificent young woman, my daughter, got married. And when she came down those steps, and it was just her and me for that moment, I was so glad that she didn't have to say to her mother, "I wish Dad could have been here." And this is what we're doing when we make health care better.
Poanta je da sam godinu i pol kasnije bio prisutan kada se ova divna mlada dama, moja kći, udala. Kada se spustila niz stube te smo ostali nasamo na trenutak bio sam presretan što nije morala reći majci: "Da je barem tata mogao biti ovdje." To je ono što želimo postići unapređivanjem zdravstvene skrbi.
Now, I want to talk briefly about a couple of other patients who are doing everything in their power to improve health care. This is Regina Holliday, a painter in Washington DC, whose husband died of kidney cancer a year after my disease. She's painting, here, a mural of his horrible final weeks in the hospital. One of the things that she discovered was that her husband's medical record in this paper folder was just disorganized. And she thought, "You know, if I have a nutrition facts label on the side of a cereal box, why can't there be something that simple telling every new nurse who comes on duty, every new doctor, the basics about my husband's condition?" So she painted this medical facts mural with a nutrition label, something like that, in a diagram of him. She then, last year, painted this diagram.
Ukratko želim spomenuti nekoliko pacijenata koji daju sve od sebe da bi poboljšali zdravstvenu skrb. Ovo je Regina Holliday, slikarica u Washingtonu čiji je muž preminuo od raka godinu dana nakon moje bolesti. Ovdje slika zidnu sliku užasnih posljednjih tjedana u bolnici. Između ostalog je otkrila da je karton njezina muža u ovom fasciklu bio dezorganiziran. Pomislila je: "Imamo naljepnice s nutritivnim tablicama na kutiji žitarica. Zašto ne postoji nešto tako jednostavno što će svakoj sestri, svakom novom doktoru, pružiti osnove o stanju mog muža? Naslikala je medicinske podatke s nutritivnom tablicom ili nečim sličnim unutar crteža svog muža. Prošle je godine naslikala ovu sliku. Proučavala je zdravstvo kao i ja.
She studied health care like me. She came to realize there were a lot of people who'd written patient-advocate books that you just don't hear about at medical conferences. Patients are such an underutilized resource. Well, as it said in my introduction, I've gotten somewhat known for saying that patients should have access to their data. I actually said at one conference a couple of years ago, "Give me my damn data, because you people can't be trusted to keep it clean." And here, she has our "damned" data -- it's a pun -- which is starting to break out, starting to break through -- the water symbolizes our data.
Shvatila je da postoji mnogo ljudi koji pišu knjige podrške pacijentima za koje nećete čuti na medicinskim konferencijama. Pacijenti su premalo korišten resurs. Kao što piše u mom uvodu, postao sam poznat jer tvrdim da treba omogućiti pristup podacima. Rekao sam na konferenciji prije nekoliko godina: "Dajte mi vražje podatke jer vam se ne može vjerovati da ćete ih čuvati." Ovo su naši ograđeni podaci -- igra riječi -- koji počinju probijati branu -- voda simbolizira naše podatke.
And in fact, I want to do a little something improvisational for you. There's a guy on Twitter that I know, a health IT guy outside Boston, and he wrote the e-Patient rap. And it goes like this.
Želim vam ovdje izvesti jednu improvizaciju. Znam jednog tipa na Twitteru, IT stručnjaka blizu Bostona koji je napisao rap o e-pacijentu koji ide ovako:
(Laughter)
(Beatboxing)
(Rapping) Gimme my damn data I wanna be an e-Patient just like Dave Gimme my damn data, 'cause it's my life to save (Normal voice) Now, I'm not going to go any further --
♫ Daj mi moje podatke ♫ ♫ Želim biti e-pacijent kao Dave ♫ ♫ Daj mi podatke jer radi se o mom životu ♫ Neću ići dalje.
(Applause) (Cheering)
(Pljesak)
Well, thank you. That shot the timing.
Hvala vam. Ovo mi je skratilo vrijeme.
(Laughter)
(Smijeh)
Think about the possibility. Why is it that iPhones and iPads advance far faster than the health tools that are available to you to help take care of your family? Here's a website, VisibleBody.com, that I stumbled across. And I thought, "You know, I wonder what my psoas muscle is?" So you can click on things and remove it. And I saw, "Aha! That's the kidney and the psoas muscle." I was rotating it in 3D and saying, "I understand now." And then I realized it reminded me of Google Earth, where you can fly to any address. And I thought, "Why not take this and connect it to my digital scan data and have Google Earth for my body?" What did Google come out with this year? Now there's Google Body browser. But you see, it's still generic. It's not my data. But if we can get that data out from behind the dam so software innovators can pounce on it the way software innovators like to do, who knows what we'll be able to come up with.
Razmislite o mogućnosti, zašto iPhonei i iPadi napreduju toliko brže od dostupnih zdravstvenih pomagala koji vam pomažu u skrbi za obitelj? Ovo je stranica, VisibleBody.com, na koju sam naletio. Pomislio sam: "Pitam se što je taj listoliki mišić?" Možete kliknuti na stvari i ukloniti ih. Vidio sam: "To je bubreg i listoliki mišić." Okretao sam ga u 3D prikazu govoreći: "Sada razumijem." Tad sam shvatio da me podsjeća na Google Earth s kojim možete otići na bilo koju adresu. "Zašto ne bih uzeo ovo, spojio to na moje podatke sa snimanja i dobio Google Earth svog tijela?" Što je Google pokrenuo ove godine? Preglednik Google Body. No još uvijek je općenit. To nisu moji podaci. No ako možemo srušiti branu i izvući podatke pa da se softverski inovatori mogu baciti na njih kao što oni vole raditi, tko zna do čega ćemo sve doći.
One final story. This is Kelly Young, a rheumatoid arthritis patient from Florida. This is a live story, unfolding just in the last few weeks. RA patients, as they call themselves -- her blog is "RA Warrior" -- have a big problem, because 40 percent of them have no visible symptoms. And that makes it really hard to tell how the disease is going, and some doctors think, "Yeah right, you're really in pain." Well, she found, through her online research, a nuclear bone scan that's usually used for cancer, but it can also reveal inflammation. And she saw that if there is no inflammation, then the scan is a uniform gray. So she took it. And the radiologist's report said, "No cancer found." Well, that's not what he was supposed to do with it. So she wanted to have it read again, and her doctor fired her. She pulled up the CD. He said, "If you don't want to follow my instructions, go away." So she pulled up the CD of the scan images, and look at all those hot spots. And she's now actively engaged on her blog in looking for assistance in getting better care. See, that is an empowered patient -- no medical training.
Posljednja priča: ovo je Kelly Young, boluje od reumatoidnog artritisa i živi na Floridi. Ovo je aktualna priča koja se događa zadnjih nekoliko tjedana. RA pacijenti, kako sami sebe zovu -- njezin blog je RA Ratnica -- imaju velik problem jer 40 posto njih nema vidljive simptome zbog čega je iznimno teško pratiti kako bolest napreduje. Neki liječnici misle: "Ma da, stvarno trpite bol." Istraživanjem na internetu otkrila je nuklearno snimanje kostiju koje se obično koristi kod raka, no može otkriti i upalu. Vidjela je da ako nema upale snimka je jednolično siva. Otišla je na snimanje. Izvješće radiologa otkrilo je da nema rak. No ta informacija joj nije trebala. Tražila je da ga ponovno prouči te ju je liječnik otpustio. Pokrenula je CD. Rekao je: "Ako ne želite slijediti moje upute, idite." Pokrenula je CD sa snimkama skeniranja pogledajte ta upaljena područja. Sada je aktivno angažirana na svom blogu i traži pomoć kako bi dobila bolju skrb. To je osnažen pacijent -- bez medicinske obuke.
We are, you are, the most underused resource in health care. What she was able to do was because she had access to the raw data. How big a deal was this? Well at TED2009, Tim Berners-Lee himself, inventor of the Web, gave a talk where he said the next big thing is not to have your browser find other people's articles about the data, but the raw data. And he got them chanting by the end of the talk, "Raw data now! Raw data now!" And I ask you, three words, please, to improve health care: Let patients help! Let patients help! Let patients help! Let patients help!
Mi smo, vi ste najmanje korišten resurs u zdravstvu. Mogla je to napraviti jer je imala pristup neobrađenim podacima. Zamislite! Na TED-u 2009. Tim Berners-Lee, izumitelj weba, rekao je da je sljedeći veliki korak ne da preglednik pretražuje članke drugih ljudi o podacima, već neobrađene podatke. Do kraja govora publika je skandirala: "Neobrađeni podaci. Neobrađeni podaci." Ja vas molim za tri riječi da bismo poboljšali zdravstvo: nek' pacijenti pomognu. Nek' pacijenti pomognu. Nek' pacijenti pomognu. Nek' pacijenti pomognu.
Thank you.
Hvala.
(Applause)
(Pljesak)
For all the patients around the world watching this on the Webcast, God bless you, everyone. Let patients help.
Svim pacijentima diljem svijeta koji gledaju ovo putem interneta: Bog vas blagoslovio -- nek' pacijenti pomognu.
Host: And bless yourself. Thank you very much.
Voditelj: Vas također. Hvala Vam.