When my brother called me in December of 1998, he said, "The news does not look good." This is him on the screen. He'd just been diagnosed with ALS, which is a disease that the average lifespan is three years. It paralyzes you. It starts by killing the motor neurons in your spinal cord. And you go from being a healthy, robust 29-year-old male to someone that cannot breathe, cannot move, cannot speak.
Kada me je brat u decembru 1998. nazvao, rekao je: “Vesti nisu dobre.” Ovo je on na ekranu. Upravo su mu postavili dijagnozu ALS-a, bolesti kod koje je prosečno preživljavanje tri godine. Ona vas parališe. Počinje uništavanjem motornih neurona u vašoj kičmenoj moždini. I vi od zdravog, snažnog 29-godišnjeg muškarca postanete neko ko ne može da diše, ne može da se kreće, ne može da govori.
This has actually been, to me, a gift, because we began a journey to learn a new way of thinking about life. And even though Steven passed away three years ago we had an amazing journey as a family. We did not even -- I think adversity is not even the right word. We looked at this and we said, "We're going to do something with this in an incredibly positive way." And I want to talk today about one of the things that we decided to do, which was to think about a new way of approaching healthcare. Because, as we all know here today, it doesn't work very well. I want to talk about it in the context of a story.
Ovo je, u stvari, za mene bio poklon, krenuli smo na put na kojem ćemo naučiti da o životu razmišljamo na nov način. Iako je Stiven preminuo pre tri godine, kao porodica smo prešli neverovatan put. Nije samo da smo imali poteškoće, to nije dovoljno reći. Gledali smo na to kao na nešto što ćemo iskoristiti na pozitivan način. Danas želim da govorim o jednoj od stvari koju smo odlučili da uradimo, a to je da osmislimo nov pristup zdravstvenom sistemu. Budući da, kao što svi znamo, on ne funkcioniše dobro. O tome želim da govorim u kontekstu priče.
This is the story of my brother. But it's just a story. And I want to go beyond the story, and go to something more. "Given my status, what is the best outcome I can hope to achieve, and how do I get there?" is what we are here to do in medicine, is what everyone should do. And those questions all have variables to them. All of our statuses are different. All of our hopes and dreams, what we want to accomplish, is different, and our paths will be different, they are all stories.
Ovo je priča mog brata. Ali, to je samo priča. Želim da odem iza te priče u nešto veće. "Imajući u vidu moje stanje, koji je najbolji ishod kojem mogu da se nadam i kako da ga postignem?" To je ono što se radi u medicini, što svi treba da radimo. Sva ta pitanja imaju svoje promenljive. Svako od nas ima različit status. Sve naše nade i snovi, ono što želimo da postignemo je drugačije i naši putevi će biti različiti, sve su to priče.
But it's a story until we convert it to data and so what we do, this concept we had, was to take Steven's status, "What is my status?" and go from this concept of walking, breathing, and then his hands, speak, and ultimately happiness and function. So, the first set of pathologies, they end up in the stick man on his icon, but the rest of them are really what's important here. Because Steven, despite the fact that he was paralyzed, as he was in that pool, he could not walk, he could not use his arms -- that's why he had the little floaty things on them, did you see those? -- he was happy. We were at the beach, he was raising his son, and he was productive.
Ali to ostaje priča dok je ne pretvorimo u podatke, i ono što radimo, ideja koju smo imali je da pođemo od Stivenovog stanja: “Kakvo je moje stanje?”, da krenemo od koncepta hodanja, disanja, zatim upotrebe šaka i govora i konačno do njegovog zadovoljstva i smisla života. Dakle, krenemo od slabosti, one se postave na ovaj crtež, na njegovu ikonicu, ali sve ostalo je ono što je ovde zaista bitno. Jer Stiven je, i pored toga što je bio paralizovan kao što je u ovom bazenu, kada nije mogao da hoda ili da koristi svoje ruke -- zbog čega ima ove male plutajuće stvari na njima, da li ste ih videli? -- bio srećan. Bili smo na plaži, odgajao je svog sina, stvarao je.
And we took this, and we converted it into data. But it's not a data point at that one moment in time. It is a data point of Steven in a context. Here he is in the pool. But here he is healthy, as a builder: taller, stronger, got all the women, amazing guy. Here he is walking down the aisle, but he can barely walk now, so it's impaired. And he could still hold his wife's hand, but he couldn't do buttons on his clothes, can't feed himself. And here he is, paralyzed completely, unable to breathe and move, over this time journey. These stories of his life, converted to data. He renovated my carriage house when he was completely paralyzed, and unable to speak, and unable to breathe, and he won an award for a historic restoration.
To smo uzeli i pretvorili u podatak. Ali to nije jedan podatak u jednom trenutku. To je podatak o Stivenu vezan za kontekst. Ovde je u bazenu. Ali ovde je zdrav, kao preduzimač: viši, snažniji, dobijao je sve žene, neverovatan momak. Ovde ide prema oltaru, ali sada jedva hoda, znači postoji slabost. I dalje je mogao da drži svoju ženu za ruku, ali nije mogao da se zakopča, nije mogao sam da jede. Evo ga ovde, potpuno oduzet, nesposoban da diše i da se kreće, u ovom vremenskom pregledu. Ove priče njegovog života su pretvorene u podatke. Renovirao je moju zgradu za kočije dok je bio potpuno paralizovan, nije mogao da govori, ni da diše, a osvojio je nagradu za istorijsku restauraciju.
So, here's Steven alone, sharing this story in the world. And this is the insight, the thing that we are excited about, because we have gone away from the community that we are, the fact that we really do love each other and want to care for each other. We need to give to others to be successful. So, Steven is sharing this story, but he is not alone. There are so many other people sharing their stories. Not stories in words, but stories in data and words. And we convert that information into this structure, this understanding, this ability to convert those stories into something that is computable, to which we can begin to change the way medicine is done and delivered.
Ovde je Stiven sam, nesebično deleći svoju priču sa drugima. A ovo je sagledavanje zbog kojeg smo uzbuđeni, jer smo se udaljili od zajednice kakva jesmo, od toga da zaista volimo jedni druge i želimo da brinemo jedni o drugima. Moramo davati drugima da bismo bili uspešni. Tako Stiven učestvuje sa svojom pričom, ali nije usamljen. Postoje mnogi drugi ljudi koji dele svoje priče. Ne priče u rečima, nego priče u podacima i rečima. Tu informaciju pretvaramo u ovu strukturu, ovo razumevanje, ovo svojstvo pretvaranja njihovih priča u nešto merljivo, u nešto čime možemo da započnemo promenu načina kako se lečenje izvodi i sprovodi.
We did this for ALS. We can do this for depression, Parkinson's disease, HIV. These are not simple, they are not internet scalable; they require thought and processes to find the meaningful information about the disease. So, this is what it looks like when you go to the website. And I'm going to show you what Patients Like Me, the company that myself, my youngest brother and a good friend from MIT started.
Uradili smo to za ALS. Isto možemo uraditi za depresiju, Parkinsonovu bolest, HIV. Ove konverzije nisu jednostavne, ne mogu se meriti na internetu; one zahtevaju razmišljanje i postupke da bi se pronašla značajna informacija o ovim bolestima. Ovako izgleda kad odete na sajt. Pokazaću vam šta je “Patients Like Me”, kompanija koju sam osnovao sa najmlađim bratom i dobrim prijateljem sa Instituta za tehnologiju Masačusetsa.
Here are the actual patients, there are 45,000 of them now, sharing their stories as data. Here is an M.S. patient. His name is Mike, and he is uniformly impaired on cognition, vision, walking, sensation. Those are things that are different for each M.S. patient. Each of them can have a different characteristic. You can see fibromyalgia, HIV, ALS, depression. Look at this HIV patient down here, Zinny. It's two years of this disease. All of the symptoms are not there. But he is working to keep his CD4 count high and his viral level low so he can make his life better.
Ovde su stvarni pacijenti, sada ih ima oko 45 000 i oni učestvuju sa svojim pričama koje su pretvorene u podatke. Ovde je pacijent oboleo od MS-a (multiple skleroze). Zove se Majk i ima podjednako oštećene kogniciju, vid, hod, senzibilitet. To je različito za svakog obolelog od MS-a. Svaki od njih može da ima različite osobine. Možete videti fibromialgiju, HIV, ALS, depresiju. Pogledajte ovog obolelog od HIV-a, Zini. Ovo je druga godina trajanja bolesti. Još nema sve simptome. Ali radi na tome da održi visoke vrednosti CD4 i titar virusa niskim, da bi mogao da živi bolje.
But you can aggregate this and you can discover things about treatments. Look at this, 2,000 people almost, on Copaxone. These are patients currently on drugs, sharing data. I love some of these, physical exercise, prayer. Anyone want to run a comparative effectiveness study on prayer against something? Let's look at prayer. What I love about this, just sort of interesting design problems. These are why people pray. Here is the schedule of how frequently they -- it's a dose. So, anyone want to see the 32 patients that pray for 60 minutes a day, and see if they're doing better, they probably are. Here they are. It's an open network, everybody is sharing. We can see it all.
Ali ovo možete da objedinite i otkrijete ponešto o lečenjima. Pogledajte ovo, skoro 2 000 obolelih uzima Kopakson. Ovo su pacijenti koji su sada na lekovima i dele podatke. Volim neke od ovih, fizičko vežbanje, molitva. Da li neko želi da radi komparativnu studiju efikasnosti molitve u odnosu na nešto drugo? Pogledajmo molitvu. Ono što volim u vezi s ovim, samo izmislite kao zanimljive probleme. Ovo su razlozi zašto se ljudi mole. Ovde je raspored koliko se često mole -- to je doza. Da li neko želi da vidi da li se ova 32 pacijenta, koji se mole 60 minuta dnevno, osećaju bolje, verovatno da. Evo ih ovde. To je otvorena mreža, svako učestvuje sa podacima. Možemo sve da vidimo.
Or, I want to look at anxiety, because people are praying for anxiety. And here is data on 15,000 people's current anxiety, right now. How they treat it, the drugs, the components of it, their side effects, all of it in a rich environment, and you can drill down and see the individuals. This amazing data allows us to drill down and see what this drug is for -- 1,500 people on this drug, I think. Yes. I want to talk to the 58 patients down here who are taking four milligrams a day. And I want to talk to the ones of those that have been doing it for more than two years. So, you can see the duration. All open, all available. I'm going to log in.
Ili želim da proučavam anksioznost, jer ljudi se mole zbog anksioznosti. Ovde su podaci o trenutnoj anksioznosti 15 000 ljudi. Kako je leče, kojim lekovima, kojim sastojcima, njihovi neželjeni efekti, sve to u različitim životnim prilikama, koje možete proučavati do pojedinaca. Ovi neverovatni podaci vam dozvoljavaju da dođete do upotrebe ovog leka -- mislim da je 1 500 ljudi na ovom leku. Da. Želim da razgovaram sa ovih 58 pacijenata koji uzimaju četiri miligrama dnevno. Želim da razgovaram samo sa onima koji uzimaju tu dozu duže od dve godine. Prema tome, možete videti trajanje. Sve je otvoreno, sve je dostupno. Sada ću se ulogovati.
And this is my brother's profile. And this is a new version of our platform we're launching right now. This is the second generation. It's going to be in Flash. And you can see here, as this animates over, Steven's actual data against the background of all other patients, against this information. The blue band is the 50th percentile. Steven is the 75th percentile, that he has non-genetic ALS. You scroll down in this profile and you can see all of his prescription drugs, but more than that, in the new version, I can look at this interactively. Wait, poor spinal capacity.
Ovo je profil mog brata. Ovo je nova verzija naše platforme koju upravo sada puštamo. To je druga generacija. Biće u Flashu. Ovde možete videti, preko ovih animacija, Stivenove stvarne podatke nasuprot pozadine koju čine svi drugi pacijenti, u poređenju sa tom informacijom. Plava traka je 50 posto. Stiven je na 75 posto, pošto ima negenetski ALS. Pregledajući taj profil možete da vidite sve njegove prepisane lekove, ali više od toga, u ovoj novoj verziji, mogu da pregledam interaktivno. Sačekajte, slabost leđa.
Doesn't this remind you of a great stock program? Wouldn't it be great if the technology we used to take care of ourselves was as good as the technology we use to make money? Detrol. In the side effects for his drug, integrated into that, the stem cell transplant that he had, the first in the world, shared openly for anyone who wants to see it.
Zar vas ovo ne podseća na veliki program akcija? Zar ne bi bilo sjajno kada bi tehnologija, koju koristimo za brigu o sebi, bila jednako dobra kao i tehnologija koju koristimo da zaradimo novac? Detrol. Među neželjenim efektima njegovih lekova, integrisana u njih, je transplantacija matičnih ćelija koju je imao prvi u svetu, razmenjena otvoreno za svakog ko želi da je vidi.
I love here -- the cyberkinetics implant, which was, again, the only patient's data that was online and available. You can adjust the time scale. You can adjust the symptoms. You can look at the interaction between how I treat my ALS. So, you click down on the ALS tab there. I'm taking three drugs to manage it. Some of them are experimental. I can look at my constipation, how to manage it. I can see magnesium citrate, and the side effects from that drug all integrated in the time in which they're meaningful.
Sviđa mi se ovo -- kibernetička proteza, što je, ponovo, bio jedini podatak o pacijentu, onlajn i dostupan. Možete podesiti vremensku skalu. Možete podesiti simptome. Možete da vidite interakciju između mojih lekova za ALS. Mogu da pritisnem ovaj ALS tab. Uzimam tri leka da bih se lečio. Neki od njih su eksperimentalni. Mogu da vidim moju opstipaciju i kako da je rešavam. Mogu da vidim magenzijum citrat, neželjene efekte tog leka koji su integrisani u značajnom vremenu.
But I want more. I don't want to just look at this cool device, I want to take this data and make something even better. I want my brother's center of the universe and his symptoms and his drugs, and all of the things that interact among those, the side effects, to be in this beautiful data galaxy that we can look at in any way we want to understand it, so that we can take this information and go beyond just this simple model of what a record is.
Ali želim više. Ne želim samo da gledam u ovaj sjajan izum, želim od ovog podatka da napravim nešto još bolje. Želim da centar sveta mog brata, njegove simptome njegove lekove i sve te stvari koje deluju jedna na drugu, neželjene efekte, stavim u ovo divno sazvežđe podataka, koje možemo da proučavamo na koji god želimo način da bi ga razumeli, tako da sa ovom informacijom možemo da odemo dalje od ovog jednostavnog modela, medicinskog kartona.
I don't even know what a medical record is. I want to solve a problem. I want an application. So, can I take this data -- rearrange yourself, put the symptoms in the left, the drugs across the top, tell me everything we know about Steven and everyone else, and what interacts. Years after he's had these drugs, I learned that everything he did to manage his excess saliva, including some positive side effects that came from other drugs, were making his constipation worse. And if anyone's ever had severe constipation, and you don't understand how much of an impact that has on your life -- yes, that was a pun.
Čak i ne znam šta je medicinski karton. Želim da rešim problem, želim aplikaciju. Dakle, mogu li ovi podaci -- nakon što se sortiraju, simptomi stave levo, lekovi prekoputa na vrh, da mi kažu sve što znamo o Stivenu i svakom drugom i šta je međusobno zavisno. Godinama nakon što je uzimao ove lekove, naučio sam sve što je činio da bi se rešio preterane salivacije, uključujući korisne propratne efekte nekih drugih lekova, što je pogoršavalo opstipaciju. Ukoliko ste bilo kad imali tešku opstipaciju onda razumete koliko to mnogo utiče na vaš život -- da, to je bila igra reči.
You're trying to manage these, and this grid is available here, and we want to understand it. No one's ever had this kind of information. So, patients have this. We're for patients. This is all about patient health care, there was no doctors on our network. This is about the patients. So, how can we take this and bring them a tool that they can go back and they can engage the medical system? And we worked hard, and we thought about it and we said, "What's something we can use all the time, that we can use in the medical care system, that everyone will understand?"
Pokušavate to da rešite, a ovde je mreža koju želimo da razumemo. Niko do sad nije imao tu vrstu informacije. Pacijenti je sad imaju. Mi smo za pacijente. Sve ovo se tiče brige o pacijentu, nije bilo lekara u našoj mreži. Ovo se odnosi na pacijenate. Kako možemo od ovoga da stvorimo sredstvo kojim oboleli mogu da se vrate i uključe u medicinski sistem? Naporno smo radili i razmišljali o tome i rekli: “Šta je to što možemo da koristimo sve vreme, što možemo da upotrebimo u sistemu zdravstvene zaštite, a svi će razumeti?”
So, the patients print it out, because hospitals usually block us because they believe we are a social network. It's actually the most used feature on the website. Doctors actually love this sheet, and they're actually really engaged. So, we went from this story of Steven and his history to data, and then back to paper, where we went back and engaged the medical care system. And here's another paper. This is a journal, PNAS -- I think it's the Proceedings of the National Academy of Science of the United States of America. You've seen multiple of these today, when everyone's bragging about the amazing things they've done. This is a report about a drug called lithium. Lithium, that is a drug used to treat bipolar disorder, that a group in Italy found slowed ALS down in 16 patients, and published it.
Pacijenti su to odštampali, zato što nas bolnice obično blokiraju misleći da smo društvena mreža. To je u stvari najviše korišćena osobina ovog sajta. Lekari zapravo vole ovu stranicu i veoma su uključeni. Počeli smo od ove priče o Stivenu, od njegove istorije do podataka, a zatim nazad na papir, gde smo ponovo uključili zdravstveni sistem. Ovde je još jedan članak. Ovo je časopis, PNAS -- mislim da je Zbornik nacionalne akademije nauka SAD-a. Danas ste videli dosta ovakvih, gde se svako hvali neverovatnim stvarima koje su uradili. Ovo je izveštaj o leku koji se zove litijum. Litijum se koristi za lečenje bipolarnog poremećaja, a italijanski tim je pronašao, u grupi od 16 pacijenata, da usporava ALS i to su objavili.
Now, we'll skip the critiques of the paper. But the short story is: If you're a patient, you want to be on the blue line. You don't want to be on the red line, you want to be on the blue line. Because the blue line is a better line. The red line is way downhill, the blue line is a good line. So, you know we said -- we looked at this, and what I love also is that people always accuse these Internet sites of promoting bad medicine and having people do things irresponsibly. So, this is what happened when PNAS published this. Ten percent of the people in our system took lithium. Ten percent of the patients started taking lithium based on 16 patients of data in a bad publication. And they call the Internet irresponsible. Here's the implication of what happens.
Za sada ćemo zanemariti sve kritike ovog rada. Ali, ukratko: ako ste pacijent želite da budete na plavoj liniji. Ne želite da budete na crvenoj liniji, želite da budete na plavoj. Zato što je plava linija bolja. Crvena je put naniže, plava linija je dobra linija. Znate, rekli smo -- mi smo ovo proučili, a takođe volim to što ljudi stalno optužuju ove Internet sajtove da podstiču loše lečenje i čine da ljudi neodgovorno rade stvari. Isto se dogodilo i kad je PNAS ovo objavio. Deset posto ljudi u našem sistemu je počelo da uzima litijum. Počeli su da uzimaju litijum na osnovu podataka dobijenih na 16 pacijenata u lošem članku. I oni kažu da je Internet neodogovoran. Ovde je nagoveštaj onog što se desilo.
There's this one guy, named Humberto, from Brazil, who unfortunately passed away nine months ago, who said, "Hey, listen. Can you help us answer this question? Because I don't want to wait for the next trial, it's going to be years. I want to know now. Can you help us?" So, we launched some tools, we let them track their blood levels. We let them share the data and exchange it. You know, a data network. And they said, you know, "Jamie, PLM, can you guys tell us whether this works or not?" And we went around and we talked to people, and they said, "You can't run a clinical trial like this. You know? You don't have the blinding, you don't have data, it doesn't follow the scientific method. It's never going to work. You can't do it."
Ovde je jedan momak, zove se Umberto, iz Brazila koji je, nažalost, preminuo pre devet meseci, koji je pitao: “Slušajte. Možete li nam pomoći da odgovorimo na pitanje? Ne želim da čekam na sledeće ispitivanje, proći će godine. Želim da znam sada. Možete li da nam pomognete?” Tako smo izbacili neke alate, dozvolili smo im da prate nivoe u krvi. Dozvolili smo im da razmenjuju i dele ove podatke. Znate, mreža podataka. Oni su tražili: “Džejmi, da li vi, momci iz PLM-a, možete da nam kažete da li je efikasan ili ne?” Raspitivali smo se, razgovarali sa ljudima i odgovorili su nam: “Ne možete tako voditi kliničko ispitivanje. Znate? Nemate slepu studiju, nemate podatke, ne pratite naučni metod. To tako nikad neće funkcionisati. Ne možete to da uradite.”
So, I said, "Okay well we can't do that. Then we can do something harder." (Laughter) I can't say whether lithium works in all ALS patients, but I can say whether it works in Humberto. I bought a Mac about two years ago, I converted over, and I was so excited about this new feature of the time machine that came in Leopard. And we said -- because it's really cool, you can go back and you can look at the entire history of your computer, and find everything you've lost, and I loved it. And I said, "What if we built a time machine for patients, except instead of going backwards, we go forwards. Can we find out what's going to happen to you, so that you can maybe change it?"
Rekao sam: “OK, ne možemo to da uradimo. Onda možemo nešto teže.” (Smeh) Ne mogu da kažem da li je litijum efikasan kod svih obolelih od ALS-a, ali mogu da kažem da li je efikasan za Umberta. Kupio sam Mac pre oko dve godine, preobratio sam se, bio sam veoma zainteresovan za ovu novu osobinu vremenskog alata koja je došla sa Leopardom. Rekli smo -- jer je veoma dobra, možete da odete u prošlost, pregledate svu istoriju vašeg kompjutera i pronađete sve što ste izgubili, to sam obožavao. Rekao sam: “Šta ako napravimo vremenski alat za pacijente, ali umesto da idemo u prošlost, idemo u budućnost. Možemo li da otkrijemo šta će se tebi dogoditi, tako da bi to možda mogao da promeniš?”
So, we did. We took all the patients like Humberto, That's the Apple background, we stole that because we didn't have time to build our own. This is a real app by the way. This is not just graphics. And you take those data, and we find the patients like him, and we bring their data together. And we bring their histories into it. And then we say, "Well how do we line them all up?" So, we line them all up so they go together around the meaningful points, integrated across everything we know about the patient. Full information, the entire course of their disease. And that's what is going to happen to Humberto, unless he does something. And he took lithium, and he went down the line. And it works almost every time.
To smo i uradili. Uzeli smo sve pacijente koji su kao Umberto, to je Apple-ova pozadina, ukrali smo je jer nismo imali vremena da napravimo našu. Uzgred rečeno, ovo je stvarna aplikacija. Ovo nije samo grafika. Uzmete te podatke, pronađete pacijente kao on i sakupite njihove podatke. Donesemo njihove istorije u to. Zatim kažemo: “Dobro, kako da ih obradimo?” Sve smo ih grupisali tako da su usaglašeni oko značajnih tačaka, integrisani kroz sve podatke koje znamo o pacijentu. Potpuna informacija, kao što je celokupni tok njihove bolesti. To će se dogoditi Umbertu ukoliko ništa ne preduzme. Uzeo je litijum i nastavio da se pogoršava. Ovo važi skoro za svakog pacijenta.
Now, the ones that it doesn't work are interesting. But almost all the time it works. It's actually scary. It's beautiful. So, we couldn't run a clinical trial, we couldn't figure it out. But we could see whether it was going to work for Humberto. And yeah, all the clinicians in the audience will talk about power and all the standard deviation. We'll do that later. But here is the answer of the mean of the patients that actually decided to take lithium. These are all the patients that started lithium. It's the Intent to Treat Curve. You can see here, the blue dots on the top, the light ones, those are the people in the study in PNAS that you wanted to be on. And the red ones are the ones, the pink ones on the bottom are the ones you didn't want to be. And the ones in the middle are all of our patients from the start of lithium at time zero, going forward, and then going backward.
Sada, interesantni su oboleli koji su izuzetak. Ali skoro uvek može da se primeni. To je zapravo zastrašujuće. To je divno. Dakle, nismo mogli da radimo kliničko ispitivanje niti da ga protumačimo. Ali mogli smo da vidimo da li će biti efkasno za Umberta. Svi kliničari u publici će govoriti o snazi ispitvanja i o standardnim devijacijama. O tome ćemo posle. Ali tu je odgovor u obliku proseka pacijenata koji su zaista odlučili da uzmu litijum. Ovo su svi pacijenti koji su počeli da uzimaju litijum. To je kriva namere za lečenje. Ovde možete videti, ove svetle plave tačke na vrhu, to su ljudi u studiji u PNAS-a, u toj grupi tačaka želite da budete. A crvene, ružičaste ovde na dnu, su one gde ne želite da budete. A ove u sredini su svi naši pacijenti koji su počeli sa litijumom u nultom vremenu, idući unapred, a zatim unazad.
So, you can see we matched them perfectly, perfectly. Terrifyingly accurate matching. And going forward, you actually don't want to be a lithium patient this time. You're actually doing slightly worse -- not significantly, but slightly worse. You don't want to be a lithium patient this time. But you know, a lot of people dropped out, the trial, there is too much drop out. Can we do the even harder thing? Can we go to the patients that actually decided to stay on lithium, because they were so convinced they were getting better?
Vidite da smo ih savršeno usaglasili, savršeno. Zastrašujući savršeno usaglašavanje. Gledajući unapred, ovaj put stvarno ne želite da uzimate litijum. Zaista vam je nešto lošije -- ne značajno, ali malo lošije. Ovaj put ne želite da uzimate litijum. Ali znate, dosta ljudi je odustalo, mislim od ispitivanja, previše je odustalo. Možemo li da uradimo nešto još teže? Da nađemo pacijente koji su stvarno odlučili da ostanu na litijumu jer su bili veoma uvereni da će im biti bolje?
We asked our control algorithm, are those 69 patients -- by the way, you'll notice that's four times the number of patients in the clinical trial -- can we look at those patients and say, "Can we match them with our time machine to the other patients that are just like them, and what happens?" Even the ones that believed they were getting better matched the controls exactly. Exactly. Those little lines? That's the power.
Pitali smo naš kontrolni algoritam za tih 69 pacijenata -- uzgred, primetićete da je to četiri puta više pacijenata nego u kliničkoj studiji -- možemo li da gledamo u te pacijente i da odgovorimo: “Možemo li našim vremenskim alatom da ih uporedimo sa drugim, njima sličnim, pacijentima i šta se tada događa?” Čak i oni koji su verovali da se oporavljaju su tačno usaglašeni sa kontrolama. U potpunosti. Ove male linije? To je snaga.
So, we -- I can't tell you lithium doesn't work. I can't tell you that if you did it at a higher dose or if you run the study proper -- I can tell you that for those 69 people that took lithium, they didn't do any better than the people that were just like them, just like me, and that we had the power to detect that at about a quarter of the strengths reported in the initial study. We did that one year ahead of the time when the first clinical trial funded by the NIH for millions of dollars failed for futility last week, and announced it.
Mogu da vam kažem da litijum ne deluje. Mogu da vam kažem da ako ga uzimate u većim dozama ili ako radite potpunu studiju -- mogu da vam kažem da tih 69 pacijenata koji su uzimali litijum nisu bili ništa bolje nego njima slični pacijenti, meni slični pacijenti, a imali smo moć da ovo otkrijemo u četvrtini jačina saopštenih u inicijalnoj studiji. To smo uradili godinu dana pre nego što je prvo kliničko ispitivanje, Nacionalni institut za zdravlje ga je finansirao milionima dolara, prošle nedelje proglašeno neuspešnim zbog uzaludnosti.
So, remember I told you about my brother's stem cell transplant. I never really knew whether it worked. And I put 100 million cells in his cisterna magna, in his lumbar cord, and filled out the IRBs and did all this work, and I never really knew. How did I not know? I mean, I didn't know what was going to happen to him. I actually asked Tim, who is the quant in our group -- we actually searched for about a year to find someone who could do the sort of math and statistics and modeling in healthcare, couldn't find anybody. So, we went to the finance industry. And there are these guys who used to model the future of interest rates, and all that kind of stuff. And some of them were available. So, we hired one. (Laughter)
Setite se, govorio sam vam o transplantaciji matičnih ćelija mog brata. Nikad nisam saznao da li je to delovalo. Stavio sam 100 miliona ćelija u veliku cisternu njegove kičmene moždine, popunio sve te formulare i sve to uradio, a da nikad nisam saznao istinu. Kako sam mogao da ne znam? Mislim, nisam znao šta će se njemu desiti, pitao sam Tima koji je matematičar u našoj grupi -- oko godinu dana smo tražili nekoga ko bi mogao da uradi tu vrstu matematike, statistike i modeliranja u zdravstvu, nismo nikog mogli da nađemo. Prešli smo na finansijski sistem. Tamo su bili ovi momci koji su modelirali kretanje kamatnih stopa i tome slično. Neki od njih su bili slobodni. Jednog smo angažovali. (Smeh)
We hired them, set them up, assisting at lab. I I.M. him things. That's the way I communicate with him, is like a little guy in a box. I I.M.ed Tim. I said, "Tim can you tell me whether my brother's stem cell transplant worked or not?" And he sent me this two days ago. It was that little outliers there. You see that guy that lived a long time? We have to go talk to him. Because I'd like to know what happened. Because something went different. But my brother didn't. My brother went straight down the line. It only works about 12 months.
Angaživali smo ih, postavili ih kao laboratorijske asistente. Slao sam mu instant poruke. To je način komunikacije sa njim, kao mali dečak u kutiji. Rekao sam: “Time, možeš li da mi ogovoriš da li je transplantacija matičnih ćelija kod mog brata bila uspešna ili ne?” Ovo mi je poslao pre dva dana. To su bila ova mala odstupanja. Vidite ovog čoveka koji je dugo živeo? Moramo da razgovaramo sa njim. Jer bih želeo da znam šta se dogodilo. Nešto je bilo drugačije. Moj brat nije dugo živeo. Išao je pravo naniže. Predviđanje važi samo oko 12 meseci.
It's the first version of the time machine. First time we ever tried it. We'll try to get it better later but 12 months so far. And, you know, I look at this, and I get really emotional. You look at the patients, you can drill in all the controls, you can look at them, you can ask them. And I found a woman that had -- we found her, she was odd because she had data after she died. And her husband had come in and entered her last functional scores, because he knew how much she cared. And I am thankful.
Ovo je prva verzija vremenskog alata. Prvi put da smo je uopšte testirali. Pokušaćemo kasnije da je poboljšamo, ali za sada je pouzdana 12 meseci. Znate, kad gledam ovo zaista postajem veoma ganut. Procenjujete pacijente, možete iznova da proučavate sve kontrole, možete da ih posmatrate, da ih pitate. Našao sam ženu koja je imala -- našli smo je, a bila je neobična jer je imala podatke nakon smrti. Njen suprug se ulogovao i uneo njene poslednje funkcionalne bodove, jer je znao koliko joj je stalo. Zahvalan sam na tome.
I can't believe that these people, years after my brother had died, helped me answer the question about whether an operation I did, and spent millions of dollars on years ago, worked or not. I wished it had been there when I'd done it the first time, and I'm really excited that it's here now, because the lab that I founded has some data on a drug that might work, and I'd like to show it. I'd like to show it in real time, now, and I want to do that for all of the diseases that we can do that for. I've got to thank the 45,000 people that are doing this social experiment with us. There is an amazing journey we are going on to become human again, to be part of community again, to share of ourselves, to be vulnerable, and it's very exciting. So, thank you. (Applause)
Ne mogu da verujem da su mi ovi ljudi, godinama nakon što je moj brat umro, pomogli da odgovorim na pitanje o tome da li je operacija koju je imao, na koju sam godinama ranije potrošio milione dolara, bila efikasna ili ne. Voleo bih da je ovo postojalo kad je urađena prvi put i zaista sam uzbuđen što je to sada ovde, jer laboratorija koju sam osnovao ima neke podatke o leku koji bi mogao da deluje, što bih hteo da izložim. Voleo bih da ga prikažem u stvarnom vremenu, sada, želim isto da uradim i za druge bolesti kod kojih je moguće. Moram da se zahvalim ovim ljudima, njih 45 000 koji sa nama učestvuju u socijalnom eksperimentu. To je neverovatno putovanje na koje smo krenuli da bi ponovo bili ljudi, da bi ponovo bili deo zajednice, da bi dali deo sebe, da budemo ranjivi a to je veoma uzbudljivo. Hvala. (Aplauz)