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.
Cand fratele meu m-a sunat in decembrie 1998 mi-a spus ca stirile nu sunt bune. Acesta este el pe ecran. Tocmai fusese diagnosticat cu ALS, care este o boala in urma careia mai supravietuiesti in medie 3 ani. Te paralizeaza. Incepe prin a-ti omori neuronii motori din sira spinarii. Si ajungi din tanarul robust si sanatos de 29 de ani, o persoana care nu poate respira, nu se poate misca, nu poate vorbi.
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.
Pentru mine acest lucru a fost un dar, pentru ca am inceput o calatorie de descoperire a unei noi perspective asupra vietii. Si cu toate ca Steven a murit in urma cu 3 ani, am avut o calatorie minunata ca familie. Nici macar nu am -- cred ca aversiunea nu este cuvantul potrivit. Ne-am uitat la aceasta boala si am spus ca vom face ceva cu ea intr-o maniera incredibil de pozitiva. Si astazi vreau sa vorbesc despre unul din lucrurile pe care am decis sa le facem, si anume sa ne gandim la o noua abordare a sistemului sanitar. Pentru ca, dupa cum toti cei prezenti aici stim, nu functioneaza foarte bine. As vrea sa vorbesc despre acest lucru in contextul unei povesti.
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.
Aceasta este povestea fratelui meu. Dar este doar o poveste. Iar eu vreau sa mergem mai departe si sa facem mai mult. "Tinand cont de conditia mea, care este cel mai bun rezultat pe care sper sa-l obtin si cum ajung acolo?" Acesta e motivul pentru care suntem in medicina si asta ar trebui sa facem toti. Iar aceste intrebari au variabile integrate. Conditiile noastre sunt diferite. Toate sperantele si visele noastre, ce vrem sa realizam difera si caile noastre difera, toate sunt povesti.
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.
Dar este o poveste pana cand o transformam in date si ce am facut, acesta a fost conceptul pe care l-am avut, a fost sa luam conditia lui Steven, "Care este conditia mea?" si sa porim de la acest concept al mersului, respiratiei, apoi mainile lui, vorbirea, iar in ultima instanta fericirea si functionalitatea. Asadar, primul set de patologii, ajung pe omuletul care este avatarul lui, dar restul sunt cele cu adevarat importante. Pentru ca Steven, desi era paralizat, cand era in bazin, nu putea merge, nu-si putea folosi bratele, de aceea avea obiectele plutitoare pe ele. Le-ati vazut? Era fericit. Eram la plaja. Isi crestea fiul. Si era productiv.
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.
Si am preluat asta si am transformat-o in informatii. Dar nu sunt informatii la un anumit moment in timp. Sunt informatii referitoare la Steven intr-un context. Iata-l in bazin. Dar aici este sanatos, fiind constructor, mai inalt, mai puternic, el avea toate femeile, minunat tip. Iata-l aici mergand spre altar, dar acum abia poate merge. Si inca putea sa-si tina de mana sotia, dar nu putea sa-si incheie nasturii, nu putea sa se hraneasca. Iar aici este paralizat complet, incapabil sa respire si sa se miste, de-a lungul acestei calatorii. Aceste povesti ale vietii sale, trasformate in date. Mi-a renovat sopronul cand era complet paralizat si incapabil de a vorbi, si incapabil de a respira si a castigat un premiu pentru o restaurare istorica.
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.
Iata-l pe Steven singur, impartasindu-si povestea. Si asta e intelegerea, lucrul de care suntem entuziasmati. Pentru ca ne-am indepartat de comunitatea in care suntem, de faptul ca chiar ne iubim si vrem sa avem grija unul de celalalt. Trebuie sa dam si altora pentru a fi cu adevarat de succes. Deci, Steven isi impartaseste povestea. Dar nu este singurul. Mai sunt atat de multi oameni care-si impartasesc povestile. Si nu le impartasesc in cuvinte, ci povesti impartasite in date si cuvinte. Si am transformat acea informatie in aceasta structura, aceasta intelegere, abilitatea de a transforma acele cuvinte in ceva calculabil, prin care putem incepe sa schimbam modul in care medicina este facuta si transmisa.
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.
Am facut asta pentru ALS. Putem face acest lucru si pentru depresie, boala Parkinson, HIV. Nu sunt simple, nu sunt scalabile de internet, necesita gandire si proces pentru a gasi informatia importanta despre boala. Deci, asa arata cand accesezi websiteul. Si va voi arata ce "Patients like me" ("Pacienti ca mine"), compania pe care eu, fratele meu mai mic, si un prieten bun de la MIT am deschis-o.
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.
Aici sunt chiar pacientii, sunt 45.000 acum, impartasind povestile lor ca date. Aici este un pacient de M.S. Numele lui este Mike, si are abilitati diminuate uniform, de perceptie, vedere, mers, senzatii. Aceste lucruri sunt diferite pentru fiecare pacient M.S. Fiecare poate avea caracteristici diferite. Se pot vedea fibromialgie, HIV, ALS, depresie. Uitati-va la acest pacient cu HIV, Zinny. Au trecut 2 ani cu aceasta boala. Toate simptomele lui nu sunt aici. Dar lucreaza sa-si tina CD4 sus si nivelul vital scazut pentru a-si face viata mai buna.
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.
Dar poti agrega asta si descoperi lucruri despre tratamente. Priviti, aproape 2.000 de oameni, pe Copaxone. Momentan, sunt pacienti pe medicamente, impartindu-si datele. Imi plac cateva din aceasta exercitii fizice, ruga. Vrea cineva sa faca un studiu comparativ de efect a rugii contra ceva? Sa ne uitam la rugă. Ce imi place la asta, doar cateva probleme interesante de model. De asta se roaga oamenii. Aici este programul cu cat de frecvent se roaga -- Este o doza. Deci, oricine poate sa vada cei 32 de pacienti ce se roaga 60 de minute pe zi, si sa vada daca o duc mai bine, probabil asa si este. Aici sunt. Sau, este o retea deschisa. Toata lumea impartaseste. Putem vedea totul.
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.
Sau, vreau sa ma uit la anxietate, pentru ca oamenii se roaga pentru anxietate. Si aici sunt datele a anxietatii a 15.000 de oameni, chiar acum. Cum o trateaza, medicamentele, componentele lor, efectele adverse, toate acestea intr-un mediu bogat, si puteti sa accesati si sa vedeti indivizii. Aceste date uimitoare ne permit sa accesam si sa vedem pentru ce este acest medicament. 1.500 de oameni cu acest medicament. Da. Vreau sa vorbesc cu cei 58 de pacienti de aici care iau 4 miligrame pe zi. Si vreau sa vorbesc cu cei care au luat pentru mai mult de 2 ani. Deci, puteti sa vedeti durata. Totul deschis, totul disponibil. Ma voi loga.
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.
Si acesta este profilul fratelui meu. Si aceasta este noua versiunii a platformei pe care o lansam acum. Aceasta este a doua generatie. Va fi pe Flash. Si puteti vedea aici, in timp ce se animeaza, datele lui Steven comparativ cu istoria tuturor pacientilor, comparat cu aceasta informatie. Banda albastra este percentila de 50. Steven este percentila de 75, intrucat are ALS nongenetic. Derulati in jos profilul sau si puteti vedea toate medicamentele prescrise pentru el, dar si mai mult, in aceasta noua versiune, ma pot uita la asta intr-un mod interactiv. Asteptati, capacitate spinala mica.
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.
Nu va aminteste de un program minunat de stocare? Nu ar fi minunat daca tehnologia folosita pentru a avea grija de noi ar fi la fel de buna ca si cea folosita cand facem bani? Detrol. In efectele adverse pentru acest medicament, integrat in ele, transplantul de celule sterm pe care l-a avut, primul in lume, l-a impartasit in mod liber pentru oricine vrea sa-l vada.
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.
Imi place aici, implantul de cyberkinetics, care a fost, iarasi, singura informatie a pacientului online si disponibila, Puteti ajusta scara timpului. Puteti ajusta simptomele. Puteti sa va uitati la interactiunea dintre cum tratez ALS-ul meu. Deci, apasati pe butonul ALS aici. Iau 3 medicamente pentru a-l tine sub control. Unele sunt experimentale. Ma pot uita la constipatia mea, cum sa ma ocup de ea. Pot vedea Magneziu Citrat. Si efectele adverse de la acel medicament toate integrate in timpul in care au sens.
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.
Dar vreau mai mult. Nu vreau doar sa ma uit la acest dispozitiv interesant. Vreau sa iau datele si sa fac ceva si mai bun. Vreau ca centrul universului fratelui meu si simptomele lui si medicamentele lui, si toate lucrurile care interactioneaza printre acestea, efectele secundare, sa fie in aceasta galaxie frumoasa de date la care putem sa ne uitam in orice mod vrem sa o intelegem. Pentru a putea lua aceasta informatie si sa mergem dincolo de acest model simplu a ce este o arhiva.
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.
Nici nu stiu ce este un raport medical. Vreau sa rezolv o problema. Vreau o aplicatie. Pentru a putea lua aceasta informatie -- sa le rearanjati singuri, sa puneti simptomele in stanga, medicamente sus, sa spuneti tot ce stim despre Steven si toti ceilalti, si ce interactioneaza. Ani dupa ce a avut aceste medicamenete, am aflat ca tot ce a facut pentru a-si tine sub control saliva in exces, inclusiv cateva efecte secundare pozitive ce au venit din alte medicamente, ii faceau constipatia mai rea. Si daca cineva a avut constipatie severa, si nu intelegeti ce mare impact poate avea asupra vietii voastre, da a fost calambur.
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?"
Incerci sa tii sub control astea, si aceasta grila este disponibila aici, si vrem sa o intelegem. Nimeni nu a avut vreodata acest fel de informatie. Deci, pacientii au asta. Suntem aici pentru pacienti. Asta e doar despre ingijirea sanatatii pacientilor. Nu au fost doctori in reteaua noastra. Este vorba despre pacienti. Deci, cum putem lua asta si sa le aducem un instrument cu care pot sa mearga inapoi si sa antreneze sistemul medical? Si am lucrat mult, si ne-am gandit la asta si am zis, "Ce putem folosi tot timpul, ce putem folosi in sistemul medical, ce va fi inteles de toata lumea?
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.
Deci, pacientii trag asta la imprimanta, pentru ca spitalele deobicei ne blocheaza pentru ca cred ca suntem o retea sociala. Este de fapt cea mai folosita trasatura pe acest website. Doctorii de fapt iubesc aceasta pagina, si sunt foarte implicati. Deci, am mers de la aceasta poveste a lui Steven si istoria lui de date, si inapoi la pagina, unde ne-am angajat intr-un sistem de ingrijire medicala. Si aici este alta pagina. Este un jurnal, PNAS. Cred ca este Procedurile Academiei Nationale de Stiinte A Statelor Unite Ale Americii. Ati vazut multe de aceste exemplare astazi, cand toata lumea lauda lucrurile minunate facut de ei. Acesta este un raport despre un medicament numit Lithium. Lithium, care este un medicament folosit sa trateze afectiuni bipolare, despre care un grup din Italia a aflat ce a incetinit ALS in 16 pacienti, si l-au publicat.
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.
Acum, vom sari peste critica la adresa articolului. Dar povestea pe scurt este ca, daca esti pacient, vrei sa fii pe linia albastra. Nu vrei sa fii pe linia rosie, vrei sa fii pe linia albastra. Pentru ca linia albastra este una mai buna. Linia rosie este prea joasa, linia albastra este o linie buna. Deci, am spus -- ne-am uitat la asta, si ce mi-a mai placut e ca oamenii acuza intotdeauna aceste site-uri de internet de promovarea medicinei rele si determinarea oamenilor in a face ceva iresponsabil. Deci, asta s-a intamplat cand PNAS a publicat asta. 10 la suta din oamenii din sistemul nostru a luat Lithium. 10 la suta din pacienti au inceput sa ia Lithium bazat pe datele a 16 pacienti intr-o publicatie rea. Si numesc internetul iresponsabil. Si aceasta este implicatia a celor ce s-au intamplat.
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."
Si aici este un barbat, numit Humberto, din Brazilia, care din pacate a decedat acum 9 luni, ce a spus, "Ascultati. Ne poti raspunde la aceasta intrebare? Pentru ca nu vreau sa astept urmatoarea cercetare, va dura ani intregi. Vreau sa stiu acum. Ne poti ajuta?" Asa ca, am lansat diferite instrumente, i-am lasat sa-si urmareasca nivelurile din sange. I-am lasat sa-si impartaseasca datele. Stiti, o retea de informatii. Si au spus: "Jamie, PLM, puteti sa ne spuneti daca aceasta functioneaza sau nu?" Si am mers in diferite locuri si am vorbit cu oameni, si au spus "Nu poti face o cercetare clinica asa. Stii? Nu ai datele, nu urmareste metoda stiintifica. Nu va merge niciodata. Nu o poti face."
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?"
Si, am spus "Bine. Pai, nu putem face asta, Atunci putem face ceva si mai greu." (Rasete) Nu pot spune daca Lithium functioneaza in toti pacientii cu ALS, dar pot spune daca lucreaza la Humberto. Si am cumparat un Mac cam cu 2 ani in urma, m-am convertit. Si am fost atat de entuziasmat de noua functionalitate a masinariei in timp care a venit odata cu Leopard. Si am spus, pentru ca este chiar grozava, poti sa te intorci si sa te uiti la intreaga istorie a computerului tau, si sa gasesti tot ce ai pierdut, si mi-a placut asta. Si am zis "Daca am construi o masinarie a timpului pentru pacienti, doar ca in loc sa ne intoarcem in timp, sa mergem in viitor. Putem afla ce se va intampla cu tine, in asa fel incat sa o schimbi?"
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.
Si am facut asta. Am luat toti pacientii ca Humberto, acela este fundalul Apple, l-am furat pentru ca nu aveam destul timp sa facem altul. Apropo, acesta este un program adevarat. Nu e doar grafica. Si iei acele informatii, si gasim pacienti ca el, si imbinam datele lor. Si aducem si istoria datelor lor. Si apoi spunem "Ei bine. Cum le aliniem?" Asa ca, le aliniem in asa fel incat se imbina in puncte importante, integrate prin tot ce stim despre pacient. Informatii totale, intregul curs al bolii sale. Si asta se va intampla si cu Humberto. doar daca nu face ceva. Si a luat Lithium, si a mers pana in josul liniei. Si lucreaza aproape intotdeauna.
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.
Acum, cele care nu functioneaza sunt interesante. Dar aproape intotdeauna functioneaza. Este infricosator chiar, este frumos. Deci, nu am putut face o cercetare clinica, nu stiam cum. Dar puteam vedea daca va functiona la Humberto. Si da, toate clinicienii din public vor vorbi de putere si toate deviatiile de standard. Vom face asta mai tarziu. Dar aici este raspunsul mediei pacientilor care chiar au decis sa ia Lithium. Aici sunt pacientii care au inceput Lithium. Are intentia de a trata curba. Si puteti vedea aici, punctele albastre, cele deschise, acestea cum oamenii in studiul PNAS care ati vrea sa fiti. Si cele rosii sunt cele, cele roz de la fund sunt cele care nu vrei sa fii. Si cele din mijloc sunt toti pacientii nostri de la inceputul Lithiumului la timpul 0, mergand inainte, si apoi mergand inapoi.
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?
Deci, puteti vedea ca le-a potrivit perfect, perfect. O potrivire infricosator de exacta. Si mergand inainte, nu vrei sa fii un pacient Lithium de data asta. Chiar te simti un pic mai rau, nu in mod semnificativ, dar putin mai rau. Nu vrei sa fii un pacient Lithium de data asta. Dar stiti, multi au renuntat, cercetarea, sunt prea multe abandonari. Putem face lucrul si mai greu? Putem merge la pacientii care au decis sa continue cu Lithium, pentru ca erau convinsi ca le mergea mai bine.
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.
Si am intrebat algoritmul de control, sunt acei 69 de pacienti, apropo veti observa ca e de 4 ori mai mari decat numarul de pacienti din cercetarea clinica, putem sa ne uitam la acesti pacienti si sa spunem, "Putem sa-i potrivim cu masinarie noastra a timpului a altor pacienti care sunt la fel ca ei, si ce se intampla?" Si chiar cei care credeau sa se fac mai bine, s-au potrivit exact cu comanda. Exact. Si acele linioare? Aceea este puterea.
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.
Deci, nu va pot spune daca Lithium va functiona la dumneavoastra. Nu iti pot spune ca daca nu iei un dozaj mai mare faci cercetarea cum trebuie, iti pot spune ca pentru cei 69 de oameni care au luat Lithium, nu au fost mai bine decat cei ca ei, ca mine, si ca avem puterea sa detectam cu aproape un sfert din puterile comunicate in studiul initial. Si am facut asta cu un an inainte de timpul cand prima cercetare clinica a fost finantata de NIH pentru milioane de dolari, a dat gres pentru inutilitate saptamana trecuta, si au anuntat-o.
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)
Si, va amintiti ca v-am spus de transplantul de celule stem a fratelui meu. Nu am stiut niciodata daca va functiona. Si am pus 100 milioane de celule in cisterna magna, in cordul sau lombar, si am facut toate IRB-urile si toata munca, si nu am stiut niciodata. Si cum de nu am stiut? Adica, nu stiam ce se va intampla cu el. Si chiar l-am intrebat pe Tim, care e analistul numeric in grupul nostru -- Chiar am cautat timp de un an pe cineva care ar putea sa faca matematica si statisticele si modelatul in asistenta medicala, nu am gasit pe nimeni. Asa ca am mers in industria finantelor. Si acolo sunt acesti barbati care obisnuiau sa modeleze viitorul a cursurilor dobanzilor, si toate lucrurile de genul ala. Si cativa erau disponibili. Asa ca am angajat unul. (Rasete)
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.
L-am angajat, l-am stabilit, asistat la laborator. Eu I.M. el lucruri. Asa comunic cu el e ca un mic om intr-o cutie. Am spus, "Tim, imi poti spune daca transplantul de celule stern a fratelui meu a functionat sau nu? Si mi-a trimis asta cu 2 zile in urma. A fost statistica de aici. Vedeti barbatul care a trait mult timp? Trebuie sa vorbim cu el. Pentru ca mi-ar placea sa stiu ce s-a intamplat. Pentru ca ceva a mers diferit. Dar fratele meu nu. Fratele meu a mers direct in josul liniei. Functioneaza doar 12 luni.
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.
Este prima versiune a masinariei in timp. Prima data cand am incercat-o. Vom incerca sa o imbunatatim mai tarziu. 12 luni pana acum. Si, stiti, ma uit la asta, si devin foarte emotional. Te uiti la pacienti. Puteti folosi toate controalele. Te poti uita la ei, ii puteti intreba. Si am gasit o femeie care a avut -- Am gasit-o, era ciudat pentru ca avea informatiile dupa ce a murit. Si sotul ei a venit si a introdus ultimele punctaje functionale, pentru ca stia cat de mult a tinut ea la asta. Si sunt recunoscator.
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)
Nu-mi vine sa cred ca acesti oameni, ani dupa decesul fratelui meu, m-au ajutat sa raspund la intrebarea despre succesul unei operatii facute si in care am investit milioane de dolari acum cativa ani. Si as fi vrut sa fie acolo cand am facut-o prima data. Si sunt foarte entuziasmat ca e aici acum. Pentru ca laboratorul pe care l-am infiintat are informatii despre un medicament care ar putea sa functioneze. Si as vrea sa-l arat. As vrea sa arat asta in timp real, acum. Si vreau sa fac asta pentru toate bolile pentru care o putem face. Trebuie sa multumesc celor 45.000 de oameni care fac acest experiment social cu noi. Este o calatorie uimitoare prin care mergem pentru a deveni umani iarasi, pentru a face parte din comunitate iarasi, sa impartasim din noi, sa fim vulnerabili, si este foarte captivant. Deci, va multumesc. (Aplauze)