TEDMED 2009
Jamie Heywood: The big idea my brother inspired
Jamie Heywood: Ideea mareata inspirata de fratele meu
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Cand fratele lui Jamie Heywood a fost diagonisticat cu ALS, si acesta si-a dedicat viata pentru lupta bolii. Fratii Heywood au construit un website ingenios unde oamenii isi impartasesc si isi inregistreaza evolutia bolii -- si au descoperit ca datele adunate aveau capacitatea imensa de a alina, de a explica si a prezice.
Jamie Heywood - Healthcare revolutionary
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him. Full bio
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him. Full bio
Double-click the English transcript below to play the video.
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
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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)
ABOUT THE SPEAKER
Jamie Heywood - Healthcare revolutionaryWhen MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him.
Why you should listen
After finding out that his brother, Stephen, had the terminal illness ALS, Jamie Haywood founded the ALS Therapy Development Institute in 1999. ALS TDI is the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatments outside of academia and for-profit corporations. They were the first to publish research on the safety of using stem cells in ALS patients.
In 2005,Jamie and his youngest brother Ben, along with close friend Jeff Cole, built PatientsLikeMe.com to give patients control and access to their healthcare information and compare it to others like them. Its bold (and somewhat controversial) approach involves aggregating users health info in order to test the effects of particular treatments, bypassing clinical trials. It was named one of "15 companies that will change the world" by CNN Money.
Although his brother passed away in the fall of 2006, Jamie continues to serve as chairman of PatientsLikeMe and on the board of directors of ALS TDI. Jamie has raised over $50 million dollars for ALS TDI and was the subject of the biography His Brother’s Keeper, written by Jonathan Weiner. He was also featured in the documentary So Much So Fast, exploring the development of ALS TDI and the personal story of he and Stephen.
Jamie Heywood | Speaker | TED.com