Jamie Heywood: The big idea my brother inspired

45,812 views ・ 2010-02-02

TED


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Traducător: Delia Halici Corector: Brandusa Gheorghe
00:15
When my brother called me in December of 1998,
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Cand fratele meu m-a sunat in decembrie 1998
00:18
he said, "The news does not look good."
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mi-a spus ca stirile nu sunt bune.
00:20
This is him on the screen.
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Acesta este el pe ecran.
00:22
He'd just been diagnosed with ALS,
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Tocmai fusese diagnosticat cu ALS,
00:24
which is a disease that the average lifespan is three years.
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care este o boala in urma careia mai supravietuiesti in medie 3 ani.
00:28
It paralyzes you. It starts by killing
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Te paralizeaza. Incepe prin a-ti omori
00:30
the motor neurons in your spinal cord.
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neuronii motori din sira spinarii.
00:33
And you go from being a healthy,
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Si ajungi din tanarul robust si sanatos
00:35
robust 29-year-old male
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de 29 de ani,
00:38
to someone that cannot breathe,
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o persoana care nu poate respira,
00:40
cannot move, cannot speak.
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nu se poate misca, nu poate vorbi.
00:46
This has actually been, to me, a gift,
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Pentru mine acest lucru a fost un dar,
00:50
because we began a journey
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pentru ca am inceput o calatorie
00:53
to learn a new way of thinking about life.
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de descoperire a unei noi perspective asupra vietii.
00:56
And even though Steven passed away three years ago
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Si cu toate ca Steven a murit in urma cu 3 ani,
01:00
we had an amazing journey as a family.
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am avut o calatorie minunata ca familie.
01:02
We did not even --
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Nici macar nu am --
01:05
I think adversity is not even the right word.
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cred ca aversiunea nu este cuvantul potrivit.
01:07
We looked at this and we said, "We're going to do something with this
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Ne-am uitat la aceasta boala si am spus ca vom face ceva cu ea
01:10
in an incredibly positive way."
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intr-o maniera incredibil de pozitiva.
01:12
And I want to talk today
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Si astazi vreau sa vorbesc
01:14
about one of the things that we decided to do,
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despre unul din lucrurile pe care am decis sa le facem,
01:17
which was to think about a new way of approaching healthcare.
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si anume sa ne gandim la o noua abordare a sistemului sanitar.
01:21
Because, as we all know here today,
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Pentru ca, dupa cum toti cei prezenti aici stim,
01:23
it doesn't work very well.
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nu functioneaza foarte bine.
01:25
I want to talk about it in the context of a story.
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As vrea sa vorbesc despre acest lucru in contextul unei povesti.
01:28
This is the story of my brother.
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Aceasta este povestea fratelui meu.
01:30
But it's just a story. And I want to go beyond the story,
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Dar este doar o poveste. Iar eu vreau sa mergem mai departe
01:33
and go to something more.
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si sa facem mai mult.
01:35
"Given my status, what is the best outcome
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"Tinand cont de conditia mea, care este cel mai bun rezultat
01:38
I can hope to achieve, and how do I get there?"
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pe care sper sa-l obtin si cum ajung acolo?"
01:41
is what we are here to do in medicine, is what everyone should do.
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Acesta e motivul pentru care suntem in medicina si asta ar trebui sa facem toti.
01:44
And those questions all have variables to them.
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Iar aceste intrebari au variabile integrate.
01:46
All of our statuses are different.
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Conditiile noastre sunt diferite.
01:48
All of our hopes and dreams, what we want to accomplish,
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Toate sperantele si visele noastre, ce vrem sa realizam
01:50
is different, and our paths will be different,
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difera si caile noastre difera,
01:52
they are all stories.
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toate sunt povesti.
01:54
But it's a story until we convert it to data
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Dar este o poveste pana cand o transformam in date
01:56
and so what we do, this concept we had,
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si ce am facut, acesta a fost conceptul pe care l-am avut,
01:58
was to take Steven's status, "What is my status?"
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a fost sa luam conditia lui Steven, "Care este conditia mea?"
02:01
and go from this concept of walking, breathing,
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si sa porim de la acest concept al mersului, respiratiei,
02:06
and then his hands, speak,
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apoi mainile lui, vorbirea,
02:09
and ultimately happiness and function.
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iar in ultima instanta fericirea si functionalitatea.
02:13
So, the first set of pathologies, they end up in the stick man
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Asadar, primul set de patologii, ajung pe omuletul care este
02:15
on his icon,
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avatarul lui,
02:17
but the rest of them are really what's important here.
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dar restul sunt cele cu adevarat importante.
02:20
Because Steven, despite the fact that he was paralyzed,
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Pentru ca Steven, desi era paralizat,
02:23
as he was in that pool, he could not walk,
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cand era in bazin, nu putea merge,
02:26
he could not use his arms -- that's why he had the little floaty things on them,
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nu-si putea folosi bratele, de aceea avea obiectele plutitoare pe ele.
02:28
did you see those? --
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Le-ati vazut?
02:30
he was happy. We were at the beach,
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Era fericit. Eram la plaja.
02:32
he was raising his son, and he was productive.
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Isi crestea fiul. Si era productiv.
02:34
And we took this, and we converted it into data.
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Si am preluat asta si am transformat-o in informatii.
02:39
But it's not a data point at that one moment in time.
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Dar nu sunt informatii la un anumit moment in timp.
02:41
It is a data point of Steven in a context.
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Sunt informatii referitoare la Steven intr-un context.
02:43
Here he is in the pool. But here he is healthy,
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Iata-l in bazin. Dar aici este sanatos,
02:45
as a builder: taller, stronger,
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fiind constructor, mai inalt, mai puternic,
02:48
got all the women, amazing guy.
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el avea toate femeile, minunat tip.
02:50
Here he is walking down the aisle,
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Iata-l aici mergand spre altar,
02:52
but he can barely walk now, so it's impaired.
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dar acum abia poate merge.
02:55
And he could still hold his wife's hand, but he couldn't do buttons on his clothes,
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Si inca putea sa-si tina de mana sotia, dar nu putea sa-si incheie nasturii,
02:57
can't feed himself.
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nu putea sa se hraneasca.
02:59
And here he is, paralyzed completely,
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Iar aici este paralizat complet,
03:01
unable to breathe and move, over this time journey.
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incapabil sa respire si sa se miste, de-a lungul acestei calatorii.
03:03
These stories of his life, converted to data.
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Aceste povesti ale vietii sale, trasformate in date.
03:06
He renovated my carriage house
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Mi-a renovat sopronul
03:08
when he was completely paralyzed, and unable to speak,
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cand era complet paralizat si incapabil de a vorbi,
03:10
and unable to breathe, and he won an award for a historic restoration.
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si incapabil de a respira si a castigat un premiu pentru o restaurare istorica.
03:16
So, here's Steven alone, sharing this story in the world.
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Iata-l pe Steven singur, impartasindu-si povestea.
03:18
And this is the insight, the thing that we are
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Si asta e intelegerea, lucrul de care suntem
03:21
excited about,
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entuziasmati.
03:23
because we have gone away from the community that we are,
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Pentru ca ne-am indepartat de comunitatea in care suntem,
03:26
the fact that we really do love each other and want to care for each other.
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de faptul ca chiar ne iubim si vrem sa avem grija unul de celalalt.
03:29
We need to give to others to be successful.
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Trebuie sa dam si altora pentru a fi cu adevarat de succes.
03:31
So, Steven is sharing this story,
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Deci, Steven isi impartaseste povestea.
03:34
but he is not alone.
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Dar nu este singurul.
03:36
There are so many other people sharing their stories.
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Mai sunt atat de multi oameni care-si impartasesc povestile.
03:38
Not stories in words, but stories in data and words.
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Si nu le impartasesc in cuvinte, ci povesti impartasite in date si cuvinte.
03:41
And we convert that information into this structure,
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Si am transformat acea informatie in aceasta structura,
03:44
this understanding, this ability to convert
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aceasta intelegere, abilitatea de a transforma
03:47
those stories into something that is computable,
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acele cuvinte in ceva calculabil,
03:49
to which we can begin to change the way
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prin care putem incepe sa schimbam
03:51
medicine is done and delivered.
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modul in care medicina este facuta si transmisa.
03:53
We did this for ALS. We can do this for depression,
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Am facut asta pentru ALS. Putem face acest lucru si pentru depresie,
03:55
Parkinson's disease, HIV.
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boala Parkinson, HIV.
03:57
These are not simple, they are not internet scalable;
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Nu sunt simple, nu sunt scalabile de internet,
03:59
they require thought and processes
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necesita gandire si proces
04:01
to find the meaningful information about the disease.
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pentru a gasi informatia importanta despre boala.
04:04
So, this is what it looks like when you go to the website.
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Deci, asa arata cand accesezi websiteul.
04:07
And I'm going to show you what Patients Like Me,
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Si va voi arata ce "Patients like me" ("Pacienti ca mine"),
04:10
the company that myself, my youngest brother
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compania pe care eu, fratele meu mai mic,
04:12
and a good friend from MIT started.
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si un prieten bun de la MIT am deschis-o.
04:14
Here are the actual patients, there are 45,000 of them now,
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Aici sunt chiar pacientii, sunt 45.000 acum,
04:17
sharing their stories as data.
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impartasind povestile lor ca date.
04:19
Here is an M.S. patient.
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Aici este un pacient de M.S.
04:21
His name is Mike, and he is uniformly impaired
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Numele lui este Mike, si are abilitati diminuate uniform,
04:23
on cognition, vision, walking, sensation.
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de perceptie, vedere, mers, senzatii.
04:26
Those are things that are different for each M.S. patient.
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Aceste lucruri sunt diferite pentru fiecare pacient M.S.
04:28
Each of them can have a different characteristic.
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Fiecare poate avea caracteristici diferite.
04:30
You can see fibromyalgia, HIV, ALS, depression.
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Se pot vedea fibromialgie, HIV, ALS, depresie.
04:35
Look at this HIV patient down here, Zinny.
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Uitati-va la acest pacient cu HIV, Zinny.
04:38
It's two years of this disease. All of the symptoms are not there.
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Au trecut 2 ani cu aceasta boala. Toate simptomele lui nu sunt aici.
04:41
But he is working to keep his CD4 count high
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Dar lucreaza sa-si tina CD4 sus
04:43
and his viral level low so he can make his life better.
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si nivelul vital scazut pentru a-si face viata mai buna.
04:46
But you can aggregate this and you can discover things about treatments.
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Dar poti agrega asta si descoperi lucruri despre tratamente.
04:50
Look at this, 2,000 people almost, on Copaxone.
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Priviti, aproape 2.000 de oameni, pe Copaxone.
04:52
These are patients currently on drugs,
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Momentan, sunt pacienti pe medicamente,
04:54
sharing data.
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impartindu-si datele.
04:56
I love some of these, physical exercise, prayer.
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Imi plac cateva din aceasta exercitii fizice, ruga.
04:59
Anyone want to run a comparative effectiveness study
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Vrea cineva sa faca un studiu comparativ de efect
05:01
on prayer against something? Let's look at prayer.
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a rugii contra ceva? Sa ne uitam la rugă.
05:03
What I love about this, just sort of interesting design problems.
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Ce imi place la asta, doar cateva probleme interesante de model.
05:07
These are why people pray.
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De asta se roaga oamenii.
05:09
Here is the schedule of how frequently they -- it's a dose.
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Aici este programul cu cat de frecvent se roaga -- Este o doza.
05:11
So, anyone want to see the 32 patients that pray for 60 minutes a day,
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Deci, oricine poate sa vada cei 32 de pacienti ce se roaga 60 de minute pe zi,
05:14
and see if they're doing better, they probably are.
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si sa vada daca o duc mai bine, probabil asa si este.
05:16
Here they are. It's an open network,
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Aici sunt. Sau, este o retea deschisa.
05:19
everybody is sharing. We can see it all.
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Toata lumea impartaseste. Putem vedea totul.
05:22
Or, I want to look at anxiety, because people are praying for anxiety.
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Sau, vreau sa ma uit la anxietate, pentru ca oamenii se roaga pentru anxietate.
05:25
And here is data on 15,000 people's current anxiety, right now.
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Si aici sunt datele a anxietatii a 15.000 de oameni, chiar acum.
05:30
How they treat it,
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Cum o trateaza,
05:33
the drugs, the components of it,
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medicamentele, componentele lor,
05:36
their side effects, all of it in a rich environment,
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efectele adverse, toate acestea intr-un mediu bogat,
05:39
and you can drill down and see the individuals.
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si puteti sa accesati si sa vedeti indivizii.
05:41
This amazing data allows us to drill down and see
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Aceste date uimitoare ne permit sa accesam si sa vedem
05:44
what this drug is for --
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pentru ce este acest medicament.
05:47
1,500 people on this drug, I think. Yes.
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1.500 de oameni cu acest medicament. Da.
05:49
I want to talk to the 58 patients down here
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Vreau sa vorbesc cu cei 58 de pacienti de aici
05:51
who are taking four milligrams a day.
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care iau 4 miligrame pe zi.
05:53
And I want to talk to the ones of those that have been doing
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Si vreau sa vorbesc cu cei care au luat
05:55
it for more than two years.
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pentru mai mult de 2 ani.
06:01
So, you can see the duration.
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Deci, puteti sa vedeti durata.
06:03
All open, all available.
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Totul deschis, totul disponibil.
06:07
I'm going to log in.
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Ma voi loga.
06:11
And this is my brother's profile.
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Si acesta este profilul fratelui meu.
06:13
And this is a new version of our platform we're launching right now.
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Si aceasta este noua versiunii a platformei pe care o lansam acum.
06:17
This is the second generation. It's going to be in Flash.
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Aceasta este a doua generatie. Va fi pe Flash.
06:19
And you can see here, as this animates over,
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Si puteti vedea aici, in timp ce se animeaza,
06:22
Steven's actual data against the background of all other patients,
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datele lui Steven comparativ cu istoria tuturor pacientilor,
06:25
against this information.
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comparat cu aceasta informatie.
06:28
The blue band is the 50th percentile. Steven is the 75th percentile,
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Banda albastra este percentila de 50. Steven este percentila de 75,
06:30
that he has non-genetic ALS.
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intrucat are ALS nongenetic.
06:33
You scroll down in this profile and you can see
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Derulati in jos profilul sau si puteti vedea
06:35
all of his prescription drugs,
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toate medicamentele prescrise pentru el,
06:37
but more than that, in the new version, I can look at this interactively.
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dar si mai mult, in aceasta noua versiune, ma pot uita la asta intr-un mod interactiv.
06:40
Wait, poor spinal capacity.
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Asteptati, capacitate spinala mica.
06:42
Doesn't this remind you of a great stock program?
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Nu va aminteste de un program minunat de stocare?
06:44
Wouldn't it be great if the technology we used to take care of ourselves
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Nu ar fi minunat daca tehnologia folosita pentru a avea grija de noi
06:46
was as good as the technology we use to make money?
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ar fi la fel de buna ca si cea folosita cand facem bani?
06:49
Detrol. In the side effects for his drug,
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Detrol. In efectele adverse pentru acest medicament,
06:51
integrated into that, the stem cell transplant that he had,
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integrat in ele, transplantul de celule sterm pe care l-a avut,
06:53
the first in the world, shared openly for anyone who wants to see it.
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primul in lume, l-a impartasit in mod liber pentru oricine vrea sa-l vada.
06:59
I love here -- the cyberkinetics implant,
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Imi place aici, implantul de cyberkinetics,
07:01
which was, again, the only patient's data that was online and available.
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care a fost, iarasi, singura informatie a pacientului online si disponibila,
07:05
You can adjust the time scale. You can adjust the symptoms.
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Puteti ajusta scara timpului. Puteti ajusta simptomele.
07:07
You can look at the interaction between how I treat my ALS.
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Puteti sa va uitati la interactiunea dintre cum tratez ALS-ul meu.
07:11
So, you click down on the ALS tab there.
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Deci, apasati pe butonul ALS aici.
07:13
I'm taking three drugs to manage it. Some of them are experimental.
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Iau 3 medicamente pentru a-l tine sub control. Unele sunt experimentale.
07:16
I can look at my constipation, how to manage it.
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Ma pot uita la constipatia mea, cum sa ma ocup de ea.
07:18
I can see magnesium citrate, and the side effects
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Pot vedea Magneziu Citrat. Si efectele adverse
07:20
from that drug all integrated in the time
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de la acel medicament toate integrate in timpul
07:22
in which they're meaningful.
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in care au sens.
07:25
But I want more.
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Dar vreau mai mult.
07:27
I don't want to just look at this cool device, I want to take this
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Nu vreau doar sa ma uit la acest dispozitiv interesant. Vreau sa iau
07:29
data and make something even better.
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datele si sa fac ceva si mai bun.
07:31
I want my brother's center of the universe and his symptoms
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Vreau ca centrul universului fratelui meu si simptomele lui
07:34
and his drugs,
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si medicamentele lui,
07:37
and all of the things that interact among those,
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si toate lucrurile care interactioneaza printre acestea,
07:39
the side effects, to be in this beautiful data galaxy
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efectele secundare, sa fie in aceasta galaxie frumoasa de date
07:42
that we can look at in any way we want to understand it,
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la care putem sa ne uitam in orice mod vrem sa o intelegem.
07:45
so that we can take this information
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Pentru a putea lua aceasta informatie
07:48
and go beyond just this simple model
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si sa mergem dincolo de acest model simplu
07:52
of what a record is.
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a ce este o arhiva.
07:55
I don't even know what a medical record is.
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Nici nu stiu ce este un raport medical.
07:57
I want to solve a problem. I want an application.
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Vreau sa rezolv o problema. Vreau o aplicatie.
07:59
So, can I take this data -- rearrange yourself,
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Pentru a putea lua aceasta informatie -- sa le rearanjati singuri,
08:02
put the symptoms in the left, the drugs across the top,
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sa puneti simptomele in stanga, medicamente sus,
08:04
tell me everything we know about Steven and everyone else,
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sa spuneti tot ce stim despre Steven si toti ceilalti,
08:06
and what interacts.
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si ce interactioneaza.
08:09
Years after he's had these drugs,
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Ani dupa ce a avut aceste medicamenete,
08:11
I learned that everything he did to manage his excess saliva,
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am aflat ca tot ce a facut pentru a-si tine sub control saliva in exces,
08:14
including some positive side effects that came from other drugs,
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inclusiv cateva efecte secundare pozitive ce au venit din alte medicamente,
08:17
were making his constipation worse.
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ii faceau constipatia mai rea.
08:19
And if anyone's ever had severe constipation,
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Si daca cineva a avut constipatie severa,
08:21
and you don't understand how much of an impact that has on your life --
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si nu intelegeti ce mare impact poate avea asupra vietii voastre,
08:23
yes, that was a pun.
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da a fost calambur.
08:26
You're trying to manage these,
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Incerci sa tii sub control astea,
08:28
and this grid is available here,
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si aceasta grila este disponibila aici,
08:30
and we want to understand it.
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si vrem sa o intelegem.
08:33
No one's ever had this kind of information.
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Nimeni nu a avut vreodata acest fel de informatie.
08:36
So, patients have this. We're for patients.
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Deci, pacientii au asta. Suntem aici pentru pacienti.
08:38
This is all about patient health care, there was no doctors on our network.
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Asta e doar despre ingijirea sanatatii pacientilor. Nu au fost doctori in reteaua noastra.
08:40
This is about the patients.
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Este vorba despre pacienti.
08:42
So, how can we take this and bring them a tool
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Deci, cum putem lua asta si sa le aducem un instrument
08:45
that they can go back and they can engage the medical system?
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cu care pot sa mearga inapoi si sa antreneze sistemul medical?
08:47
And we worked hard, and we thought about it and we said,
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Si am lucrat mult, si ne-am gandit la asta si am zis,
08:50
"What's something we can use all the time,
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"Ce putem folosi tot timpul,
08:52
that we can use in the medical care system,
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ce putem folosi in sistemul medical,
08:54
that everyone will understand?"
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ce va fi inteles de toata lumea?
08:56
So, the patients print it out,
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Deci, pacientii trag asta la imprimanta,
08:58
because hospitals usually block us
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pentru ca spitalele deobicei ne blocheaza
09:00
because they believe we are a social network.
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pentru ca cred ca suntem o retea sociala.
09:03
It's actually the most used feature on the website.
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Este de fapt cea mai folosita trasatura pe acest website.
09:05
Doctors actually love this sheet, and they're actually really engaged.
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Doctorii de fapt iubesc aceasta pagina, si sunt foarte implicati.
09:08
So, we went from this story of Steven
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Deci, am mers de la aceasta poveste a lui Steven
09:11
and his history to data, and then back to paper,
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si istoria lui de date, si inapoi la pagina,
09:14
where we went back and engaged the medical care system.
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unde ne-am angajat intr-un sistem de ingrijire medicala.
09:15
And here's another paper.
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Si aici este alta pagina.
09:17
This is a journal, PNAS --
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Este un jurnal, PNAS.
09:19
I think it's the Proceedings of the National Academy of Science
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Cred ca este Procedurile Academiei Nationale de Stiinte
09:21
of the United States of America.
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A Statelor Unite Ale Americii.
09:23
You've seen multiple of these today, when everyone's bragging about
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Ati vazut multe de aceste exemplare astazi, cand toata lumea lauda
09:25
the amazing things they've done.
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lucrurile minunate facut de ei.
09:27
This is a report about a drug called lithium.
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Acesta este un raport despre un medicament numit Lithium.
09:29
Lithium, that is a drug used to treat bipolar disorder,
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Lithium, care este un medicament folosit sa trateze afectiuni bipolare,
09:33
that a group in Italy found
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despre care un grup din Italia a aflat
09:35
slowed ALS down in 16 patients, and published it.
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ce a incetinit ALS in 16 pacienti, si l-au publicat.
09:38
Now, we'll skip the critiques of the paper.
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Acum, vom sari peste critica la adresa articolului.
09:40
But the short story is: If you're a patient,
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Dar povestea pe scurt este ca, daca esti pacient,
09:42
you want to be on the blue line.
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vrei sa fii pe linia albastra.
09:44
You don't want to be on the red line, you want to be on the blue line.
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Nu vrei sa fii pe linia rosie, vrei sa fii pe linia albastra.
09:46
Because the blue line is a better line. The red line
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Pentru ca linia albastra este una mai buna. Linia rosie
09:48
is way downhill, the blue line is a good line.
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este prea joasa, linia albastra este o linie buna.
09:50
So, you know we said -- we looked at this, and what I love also
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Deci, am spus -- ne-am uitat la asta, si ce mi-a mai placut
09:54
is that people always accuse these Internet sites
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e ca oamenii acuza intotdeauna aceste site-uri de internet
09:56
of promoting bad medicine and having people do things irresponsibly.
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de promovarea medicinei rele si determinarea oamenilor in a face ceva iresponsabil.
09:59
So, this is what happened when PNAS published this.
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Deci, asta s-a intamplat cand PNAS a publicat asta.
10:02
Ten percent of the people in our system took lithium.
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10 la suta din oamenii din sistemul nostru a luat Lithium.
10:05
Ten percent of the patients started taking lithium based on 16 patients of data
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10 la suta din pacienti au inceput sa ia Lithium bazat pe datele a 16 pacienti
10:08
in a bad publication.
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intr-o publicatie rea.
10:10
And they call the Internet irresponsible.
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Si numesc internetul iresponsabil.
10:12
Here's the implication of what happens.
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Si aceasta este implicatia a celor ce s-au intamplat.
10:14
There's this one guy, named Humberto, from Brazil,
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Si aici este un barbat, numit Humberto, din Brazilia,
10:17
who unfortunately passed away nine months ago,
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care din pacate a decedat acum 9 luni,
10:20
who said, "Hey, listen. Can you help us answer this question?
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ce a spus, "Ascultati. Ne poti raspunde la aceasta intrebare?
10:22
Because I don't want to wait for the next trial, it's going to be years.
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Pentru ca nu vreau sa astept urmatoarea cercetare, va dura ani intregi.
10:25
I want to know now. Can you help us?"
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Vreau sa stiu acum. Ne poti ajuta?"
10:27
So, we launched some tools, we let them track their blood levels.
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Asa ca, am lansat diferite instrumente, i-am lasat sa-si urmareasca nivelurile din sange.
10:30
We let them share the data and exchange it.
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I-am lasat sa-si impartaseasca datele.
10:32
You know, a data network.
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Stiti, o retea de informatii.
10:35
And they said, you know, "Jamie, PLM,
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Si au spus: "Jamie, PLM,
10:37
can you guys tell us whether this works or not?"
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puteti sa ne spuneti daca aceasta functioneaza sau nu?"
10:39
And we went around and we talked to people,
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Si am mers in diferite locuri si am vorbit cu oameni,
10:41
and they said, "You can't run a clinical trial like this. You know?
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si au spus "Nu poti face o cercetare clinica asa. Stii?
10:43
You don't have the blinding, you don't have data,
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Nu ai datele,
10:45
it doesn't follow the scientific method.
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nu urmareste metoda stiintifica.
10:47
It's never going to work. You can't do it."
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Nu va merge niciodata. Nu o poti face."
10:49
So, I said, "Okay well we can't do that. Then we can do something harder."
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Si, am spus "Bine. Pai, nu putem face asta, Atunci putem face ceva si mai greu."
10:52
(Laughter)
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(Rasete)
10:55
I can't say whether lithium works in all ALS patients,
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Nu pot spune daca Lithium functioneaza in toti pacientii cu ALS,
10:57
but I can say whether it works in Humberto.
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dar pot spune daca lucreaza la Humberto.
11:00
I bought a Mac about two years ago, I converted over,
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Si am cumparat un Mac cam cu 2 ani in urma, m-am convertit.
11:02
and I was so excited about this new feature of the time machine
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Si am fost atat de entuziasmat de noua functionalitate a masinariei in timp
11:04
that came in Leopard. And we said -- because it's really cool,
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care a venit odata cu Leopard. Si am spus, pentru ca este chiar grozava,
11:06
you can go back and you can look at the entire history of your computer,
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poti sa te intorci si sa te uiti la intreaga istorie a computerului tau,
11:08
and find everything you've lost, and I loved it.
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si sa gasesti tot ce ai pierdut, si mi-a placut asta.
11:10
And I said, "What if we built a time machine for patients,
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Si am zis "Daca am construi o masinarie a timpului pentru pacienti,
11:14
except instead of going backwards, we go forwards.
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doar ca in loc sa ne intoarcem in timp, sa mergem in viitor.
11:17
Can we find out what's going to happen to you,
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Putem afla ce se va intampla cu tine,
11:20
so that you can maybe change it?"
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in asa fel incat sa o schimbi?"
11:23
So, we did. We took all the patients like Humberto,
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Si am facut asta. Am luat toti pacientii ca Humberto,
11:26
That's the Apple background, we stole that because we didn't have time
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acela este fundalul Apple, l-am furat pentru ca nu aveam destul timp
11:28
to build our own. This is a real app by the way.
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sa facem altul. Apropo, acesta este un program adevarat.
11:30
This is not just graphics.
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Nu e doar grafica.
11:32
And you take those data, and we find the patients like him, and we bring
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Si iei acele informatii, si gasim pacienti ca el, si imbinam
11:34
their data together. And we bring their histories into it.
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datele lor. Si aducem si istoria datelor lor.
11:38
And then we say, "Well how do we line them all up?"
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Si apoi spunem "Ei bine. Cum le aliniem?"
11:40
So, we line them all up so they go together
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Asa ca, le aliniem in asa fel incat
11:42
around the meaningful points,
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se imbina in puncte importante,
11:44
integrated across everything we know about the patient.
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integrate prin tot ce stim despre pacient.
11:46
Full information, the entire course of their disease.
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Informatii totale, intregul curs al bolii sale.
11:50
And that's what is going to happen to Humberto,
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Si asta se va intampla si cu Humberto.
11:52
unless he does something.
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doar daca nu face ceva.
11:54
And he took lithium, and he went down the line.
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Si a luat Lithium, si a mers pana in josul liniei.
11:57
And it works almost every time.
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Si lucreaza aproape intotdeauna.
12:00
Now, the ones that it doesn't work are interesting.
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Acum, cele care nu functioneaza sunt interesante.
12:02
But almost all the time it works.
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Dar aproape intotdeauna functioneaza.
12:05
It's actually scary. It's beautiful.
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Este infricosator chiar, este frumos.
12:07
So, we couldn't run a clinical trial, we couldn't figure it out.
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Deci, nu am putut face o cercetare clinica, nu stiam cum.
12:09
But we could see whether it was going to work for Humberto.
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Dar puteam vedea daca va functiona la Humberto.
12:12
And yeah, all the clinicians in the audience will talk about power
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Si da, toate clinicienii din public vor vorbi de putere
12:14
and all the standard deviation. We'll do that later.
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si toate deviatiile de standard. Vom face asta mai tarziu.
12:16
But here is the answer
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Dar aici este raspunsul
12:20
of the mean of the patients that actually decided
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mediei pacientilor care chiar au decis
12:22
to take lithium.
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sa ia Lithium.
12:24
These are all the patients that started lithium.
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Aici sunt pacientii care au inceput Lithium.
12:26
It's the Intent to Treat Curve.
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Are intentia de a trata curba.
12:28
You can see here, the blue dots on the top, the light ones,
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Si puteti vedea aici, punctele albastre, cele deschise,
12:32
those are the people in the study in PNAS
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acestea cum oamenii in studiul PNAS
12:34
that you wanted to be on. And the red ones are the ones,
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care ati vrea sa fiti. Si cele rosii sunt cele,
12:36
the pink ones on the bottom are the ones you didn't want to be.
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cele roz de la fund sunt cele care nu vrei sa fii.
12:38
And the ones in the middle are all of our patients
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Si cele din mijloc sunt toti pacientii nostri
12:41
from the start of lithium at time zero,
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de la inceputul Lithiumului la timpul 0,
12:43
going forward, and then going backward.
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mergand inainte, si apoi mergand inapoi.
12:47
So, you can see we matched them perfectly, perfectly.
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Deci, puteti vedea ca le-a potrivit perfect, perfect.
12:50
Terrifyingly accurate matching.
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O potrivire infricosator de exacta.
12:52
And going forward, you actually don't want to be a lithium patient this time.
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Si mergand inainte, nu vrei sa fii un pacient Lithium de data asta.
12:56
You're actually doing slightly worse -- not significantly,
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Chiar te simti un pic mai rau, nu in mod semnificativ,
12:58
but slightly worse. You don't want to be a lithium patient this time.
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dar putin mai rau. Nu vrei sa fii un pacient Lithium de data asta.
13:01
But you know, a lot of people dropped out,
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Dar stiti, multi au renuntat,
13:04
the trial, there is too much drop out.
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cercetarea, sunt prea multe abandonari.
13:06
Can we do the even harder thing? Can we go to the patients
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Putem face lucrul si mai greu? Putem merge la pacientii
13:08
that actually decided to stay on lithium,
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care au decis sa continue cu Lithium,
13:12
because they were so convinced they were getting better?
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pentru ca erau convinsi ca le mergea mai bine.
13:14
We asked our control algorithm,
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Si am intrebat algoritmul de control,
13:16
are those 69 patients -- by the way, you'll notice
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sunt acei 69 de pacienti, apropo veti observa
13:18
that's four times the number of patients in the clinical trial --
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ca e de 4 ori mai mari decat numarul de pacienti din cercetarea clinica,
13:21
can we look at those patients and say,
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putem sa ne uitam la acesti pacienti si sa spunem,
13:24
"Can we match them with our time machine
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"Putem sa-i potrivim cu masinarie noastra a timpului
13:27
to the other patients that are just like them,
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a altor pacienti care sunt la fel ca ei,
13:29
and what happens?"
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si ce se intampla?"
13:31
Even the ones that believed they were getting better
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Si chiar cei care credeau sa se fac mai bine,
13:34
matched the controls exactly. Exactly.
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s-au potrivit exact cu comanda. Exact.
13:37
Those little lines? That's the power.
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Si acele linioare? Aceea este puterea.
13:39
So, we -- I can't tell you lithium doesn't work. I can't tell you
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Deci, nu va pot spune daca Lithium va functiona la dumneavoastra. Nu iti pot spune
13:41
that if you did it at a higher dose
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ca daca nu iei un dozaj mai mare
13:43
or if you run the study proper -- I can tell you
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faci cercetarea cum trebuie, iti pot spune
13:45
that for those 69 people that took lithium,
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ca pentru cei 69 de oameni care au luat Lithium,
13:49
they didn't do any better than the people that were just like them,
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nu au fost mai bine decat cei ca ei,
13:51
just like me,
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ca mine,
13:53
and that we had the power to detect that at about
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si ca avem puterea sa detectam cu aproape
13:56
a quarter of the strengths reported in the initial study.
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un sfert din puterile comunicate in studiul initial.
13:59
We did that one year ahead of the time
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Si am facut asta cu un an inainte de timpul
14:02
when the first clinical trial funded by the NIH
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cand prima cercetare clinica a fost finantata de NIH
14:04
for millions of dollars failed for futility last week,
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pentru milioane de dolari, a dat gres pentru inutilitate saptamana trecuta,
14:07
and announced it.
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si au anuntat-o.
14:10
So, remember I told you about my brother's stem cell transplant.
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Si, va amintiti ca v-am spus de transplantul de celule stem a fratelui meu.
14:13
I never really knew whether it worked.
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Nu am stiut niciodata daca va functiona.
14:16
And I put 100 million cells in his cisterna magna,
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Si am pus 100 milioane de celule in cisterna magna,
14:19
in his lumbar cord,
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in cordul sau lombar,
14:21
and filled out the IRBs and did all this work,
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si am facut toate IRB-urile si toata munca,
14:23
and I never really knew.
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si nu am stiut niciodata.
14:26
How did I not know?
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Si cum de nu am stiut?
14:28
I mean, I didn't know what was going to happen to him.
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Adica, nu stiam ce se va intampla cu el.
14:30
I actually asked Tim, who is the quant in our group --
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Si chiar l-am intrebat pe Tim, care e analistul numeric in grupul nostru --
14:33
we actually searched for about a year to find someone
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Chiar am cautat timp de un an pe cineva
14:36
who could do the sort of math and statistics and modeling
336
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care ar putea sa faca matematica si statisticele si modelatul
14:38
in healthcare, couldn't find anybody. So, we went to the finance industry.
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in asistenta medicala, nu am gasit pe nimeni. Asa ca am mers in industria finantelor.
14:41
And there are these guys who used to model the future
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Si acolo sunt acesti barbati care obisnuiau sa modeleze viitorul
14:43
of interest rates, and all that kind of stuff.
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a cursurilor dobanzilor, si toate lucrurile de genul ala.
14:45
And some of them were available. So, we hired one.
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Si cativa erau disponibili. Asa ca am angajat unul.
14:48
(Laughter)
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(Rasete)
14:51
We hired them, set them up, assisting at lab.
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L-am angajat, l-am stabilit, asistat la laborator.
14:53
I I.M. him things. That's the way I communicate with him,
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Eu I.M. el lucruri. Asa comunic cu el
14:55
is like a little guy in a box. I I.M.ed Tim. I said,
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e ca un mic om intr-o cutie. Am spus,
14:57
"Tim can you tell me whether my brother's stem cell transplant
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"Tim, imi poti spune daca transplantul de celule stern a fratelui meu
14:59
worked or not?"
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a functionat sau nu?
15:02
And he sent me this two days ago.
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Si mi-a trimis asta cu 2 zile in urma.
15:05
It was that little outliers there. You see that guy that lived a long time?
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A fost statistica de aici. Vedeti barbatul care a trait mult timp?
15:08
We have to go talk to him. Because I'd like to know what happened.
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Trebuie sa vorbim cu el. Pentru ca mi-ar placea sa stiu ce s-a intamplat.
15:10
Because something went different.
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Pentru ca ceva a mers diferit.
15:12
But my brother didn't. My brother went straight down the line.
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Dar fratele meu nu. Fratele meu a mers direct in josul liniei.
15:15
It only works about 12 months.
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Functioneaza doar 12 luni.
15:17
It's the first version of the time machine.
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Este prima versiune a masinariei in timp.
15:19
First time we ever tried it. We'll try to get it better later
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Prima data cand am incercat-o. Vom incerca sa o imbunatatim mai tarziu.
15:21
but 12 months so far.
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12 luni pana acum.
15:24
And, you know, I look at this,
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Si, stiti, ma uit la asta,
15:28
and I get really emotional.
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si devin foarte emotional.
15:30
You look at the patients, you can drill in all the controls,
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Te uiti la pacienti. Puteti folosi toate controalele.
15:32
you can look at them, you can ask them.
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Te poti uita la ei, ii puteti intreba.
15:34
And I found a woman that had --
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Si am gasit o femeie care a avut --
15:37
we found her, she was odd because she had data
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Am gasit-o, era ciudat pentru ca avea informatiile
15:39
after she died.
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dupa ce a murit.
15:41
And her husband had come in and entered her last functional scores,
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Si sotul ei a venit si a introdus ultimele punctaje functionale,
15:44
because he knew how much she cared.
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pentru ca stia cat de mult a tinut ea la asta.
15:47
And I am thankful.
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Si sunt recunoscator.
15:50
I can't believe that these people,
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Nu-mi vine sa cred ca acesti oameni,
15:52
years after my brother had died,
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ani dupa decesul fratelui meu,
15:54
helped me answer the question about whether
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m-au ajutat sa raspund la intrebarea despre
15:56
an operation I did, and spent millions of dollars on
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succesul unei operatii facute si in care am investit
15:59
years ago, worked or not.
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milioane de dolari acum cativa ani.
16:01
I wished it had been there
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Si as fi vrut sa fie acolo
16:03
when I'd done it the first time,
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cand am facut-o prima data.
16:05
and I'm really excited that it's here now,
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Si sunt foarte entuziasmat ca e aici acum.
16:07
because the lab that I founded
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Pentru ca laboratorul pe care l-am infiintat
16:12
has some data on a drug that might work,
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are informatii despre un medicament care ar putea sa functioneze.
16:14
and I'd like to show it.
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Si as vrea sa-l arat.
16:18
I'd like to show it in real time, now,
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As vrea sa arat asta in timp real, acum.
16:20
and I want to do that for all of the diseases that we can do that for.
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Si vreau sa fac asta pentru toate bolile pentru care o putem face.
16:25
I've got to thank the 45,000 people
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Trebuie sa multumesc celor 45.000 de oameni
16:28
that are doing this social experiment with us.
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care fac acest experiment social cu noi.
16:31
There is an amazing journey we are going on
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Este o calatorie uimitoare prin care mergem
16:34
to become human again,
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pentru a deveni umani iarasi,
16:36
to be part of community again,
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pentru a face parte din comunitate iarasi,
16:39
to share of ourselves, to be vulnerable,
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sa impartasim din noi, sa fim vulnerabili,
16:41
and it's very exciting. So, thank you.
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si este foarte captivant. Deci, va multumesc.
16:44
(Applause)
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(Aplauze)
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