ABOUT THE SPEAKER
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.

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.

More profile about the speaker
Jamie Heywood | Speaker | TED.com
TEDMED 2009

Jamie Heywood: The big idea my brother inspired

Jamie Heywood: Ideea mareata inspirata de fratele meu

Filmed:
594,245 views

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.
- 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

Double-click the English transcript below to play the video.

00:15
When my brotherfrate calleddenumit me in DecemberDecembrie of 1998,
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Cand fratele meu m-a sunat in decembrie 1998
00:18
he said, "The newsștiri does not look good."
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mi-a spus ca stirile nu sunt bune.
00:20
This is him on the screenecran.
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Acesta este el pe ecran.
00:22
He'dEl ar just been diagnoseddiagnosticat with ALSALS,
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Tocmai fusese diagnosticat cu ALS,
00:24
whichcare is a diseaseboală that the averagein medie lifespandurata de viata is threeTrei yearsani.
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care este o boala in urma careia mai supravietuiesti in medie 3 ani.
00:28
It paralyzesparalizează you. It startsîncepe by killingucidere
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Te paralizeaza. Incepe prin a-ti omori
00:30
the motormotor neuronsneuroni in your spinalspinal cordcordon.
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neuronii motori din sira spinarii.
00:33
And you go from beingfiind a healthysănătos,
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Si ajungi din tanarul robust si sanatos
00:35
robustrobust 29-year-old-de ani malemasculin
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de 29 de ani,
00:38
to someonecineva that cannotnu poti breathea respira,
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o persoana care nu poate respira,
00:40
cannotnu poti movemișcare, cannotnu poti speakvorbi.
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nu se poate misca, nu poate vorbi.
00:46
This has actuallyde fapt been, to me, a giftcadou,
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Pentru mine acest lucru a fost un dar,
00:50
because we begana început a journeycălătorie
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pentru ca am inceput o calatorie
00:53
to learnînvăța a newnou way of thinkinggândire about life.
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de descoperire a unei noi perspective asupra vietii.
00:56
And even thoughdeşi StevenSteven passeda trecut away threeTrei yearsani agoîn urmă
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Si cu toate ca Steven a murit in urma cu 3 ani,
01:00
we had an amazinguimitor journeycălătorie as a familyfamilie.
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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 adversityadversitate is not even the right wordcuvânt.
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cred ca aversiunea nu este cuvantul potrivit.
01:07
We lookedprivit 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 incrediblyincredibil positivepozitiv way."
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intr-o maniera incredibil de pozitiva.
01:12
And I want to talk todayastăzi
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Si astazi vreau sa vorbesc
01:14
about one of the things that we decideda decis to do,
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despre unul din lucrurile pe care am decis sa le facem,
01:17
whichcare was to think about a newnou way of approachingse apropie healthcaresănătate.
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si anume sa ne gandim la o noua abordare a sistemului sanitar.
01:21
Because, as we all know here todayastăzi,
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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 contextcontext of a storypoveste.
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As vrea sa vorbesc despre acest lucru in contextul unei povesti.
01:28
This is the storypoveste of my brotherfrate.
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Aceasta este povestea fratelui meu.
01:30
But it's just a storypoveste. And I want to go beyonddincolo the storypoveste,
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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
"GivenAvând în vedere my statusstare, what is the bestCel mai bun outcomerezultat
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"Tinand cont de conditia mea, care este cel mai bun rezultat
01:38
I can hopesperanţă to achieveobține, 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 medicinemedicament, is what everyonetoata lumea 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 questionsîntrebări all have variablesvariabile to them.
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Iar aceste intrebari au variabile integrate.
01:46
All of our statusesStatusuri are differentdiferit.
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Conditiile noastre sunt diferite.
01:48
All of our hopessperanțe and dreamsvise, what we want to accomplishrealiza,
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Toate sperantele si visele noastre, ce vrem sa realizam
01:50
is differentdiferit, and our pathscăi will be differentdiferit,
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difera si caile noastre difera,
01:52
they are all storiespovestiri.
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toate sunt povesti.
01:54
But it's a storypoveste untilpana cand we convertconvertit it to datadate
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Dar este o poveste pana cand o transformam in date
01:56
and so what we do, this conceptconcept 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'sSteven pe statusstare, "What is my statusstare?"
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a fost sa luam conditia lui Steven, "Care este conditia mea?"
02:01
and go from this conceptconcept of walkingmers, breathingrespiraţie,
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si sa porim de la acest concept al mersului, respiratiei,
02:06
and then his handsmâini, speakvorbi,
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apoi mainile lui, vorbirea,
02:09
and ultimatelyîn cele din urmă happinessfericire and functionfuncţie.
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iar in ultima instanta fericirea si functionalitatea.
02:13
So, the first seta stabilit of pathologiespatologii, they endSfârşit up in the stickbăț man
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Asadar, primul set de patologii, ajung pe omuletul care este
02:15
on his iconicoană,
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avatarul lui,
02:17
but the restodihnă of them are really what's importantimportant here.
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dar restul sunt cele cu adevarat importante.
02:20
Because StevenSteven, despitein ciuda the factfapt that he was paralyzedparalizat,
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Pentru ca Steven, desi era paralizat,
02:23
as he was in that poolpiscină, he could not walkmers pe jos,
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cand era in bazin, nu putea merge,
02:26
he could not use his armsarme -- that's why he had the little floatyfloaty 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 happyfericit. We were at the beachplajă,
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Era fericit. Eram la plaja.
02:32
he was raisingridicare his sonfiu, and he was productiveproductiv.
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Isi crestea fiul. Si era productiv.
02:34
And we tooka luat this, and we convertedconvertit it into datadate.
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Si am preluat asta si am transformat-o in informatii.
02:39
But it's not a datadate pointpunct at that one momentmoment in time.
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Dar nu sunt informatii la un anumit moment in timp.
02:41
It is a datadate pointpunct of StevenSteven in a contextcontext.
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Sunt informatii referitoare la Steven intr-un context.
02:43
Here he is in the poolpiscină. But here he is healthysănătos,
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Iata-l in bazin. Dar aici este sanatos,
02:45
as a builderconstructor: tallermai inalt, strongermai puternic,
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fiind constructor, mai inalt, mai puternic,
02:48
got all the womenfemei, amazinguimitor guy.
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el avea toate femeile, minunat tip.
02:50
Here he is walkingmers down the aisleculoar,
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Iata-l aici mergand spre altar,
02:52
but he can barelyde abia walkmers pe jos now, so it's impairedafectarea.
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dar acum abia poate merge.
02:55
And he could still holddeține his wife'ssoţia lui handmână, but he couldn'tnu a putut do buttonsbutoane on his clotheshaine,
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Si inca putea sa-si tina de mana sotia, dar nu putea sa-si incheie nasturii,
02:57
can't feeda hrani himselfse.
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nu putea sa se hraneasca.
02:59
And here he is, paralyzedparalizat completelycomplet,
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Iar aici este paralizat complet,
03:01
unableincapabil to breathea respira and movemișcare, over this time journeycălătorie.
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incapabil sa respire si sa se miste, de-a lungul acestei calatorii.
03:03
These storiespovestiri of his life, convertedconvertit to datadate.
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Aceste povesti ale vietii sale, trasformate in date.
03:06
He renovatedrenovat my carriagetransport housecasă
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Mi-a renovat sopronul
03:08
when he was completelycomplet paralyzedparalizat, and unableincapabil to speakvorbi,
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cand era complet paralizat si incapabil de a vorbi,
03:10
and unableincapabil to breathea respira, and he woncastigat an awardadjudecare for a historicistoric restorationrestaurare.
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si incapabil de a respira si a castigat un premiu pentru o restaurare istorica.
03:16
So, here'saici e StevenSteven alonesingur, sharingpartajare this storypoveste in the worldlume.
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Iata-l pe Steven singur, impartasindu-si povestea.
03:18
And this is the insightînțelegere, the thing that we are
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Si asta e intelegerea, lucrul de care suntem
03:21
excitedexcitat about,
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entuziasmati.
03:23
because we have goneplecat away from the communitycomunitate that we are,
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Pentru ca ne-am indepartat de comunitatea in care suntem,
03:26
the factfapt that we really do love eachfiecare other and want to careîngrijire for eachfiecare 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 othersalții to be successfulde succes.
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Trebuie sa dam si altora pentru a fi cu adevarat de succes.
03:31
So, StevenSteven is sharingpartajare this storypoveste,
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Deci, Steven isi impartaseste povestea.
03:34
but he is not alonesingur.
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Dar nu este singurul.
03:36
There are so manymulți other people sharingpartajare theiral lor storiespovestiri.
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Mai sunt atat de multi oameni care-si impartasesc povestile.
03:38
Not storiespovestiri in wordscuvinte, but storiespovestiri in datadate and wordscuvinte.
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Si nu le impartasesc in cuvinte, ci povesti impartasite in date si cuvinte.
03:41
And we convertconvertit that informationinformație into this structurestructura,
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Si am transformat acea informatie in aceasta structura,
03:44
this understandingînţelegere, this abilityabilitate to convertconvertit
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aceasta intelegere, abilitatea de a transforma
03:47
those storiespovestiri into something that is computableComputable,
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acele cuvinte in ceva calculabil,
03:49
to whichcare we can beginÎNCEPE to changeSchimbare the way
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prin care putem incepe sa schimbam
03:51
medicinemedicament is doneTerminat and deliveredlivrat.
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modul in care medicina este facuta si transmisa.
03:53
We did this for ALSALS. We can do this for depressiondepresiune,
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Am facut asta pentru ALS. Putem face acest lucru si pentru depresie,
03:55
Parkinson'sParkinson diseaseboală, HIVHIV.
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boala Parkinson, HIV.
03:57
These are not simplesimplu, they are not internetInternet scalablescalabil;
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Nu sunt simple, nu sunt scalabile de internet,
03:59
they requirenecesita thought and processesprocese
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necesita gandire si proces
04:01
to find the meaningfulplin de înțeles informationinformație about the diseaseboală.
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pentru a gasi informatia importanta despre boala.
04:04
So, this is what it looksarată like when you go to the websitewebsite.
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Deci, asa arata cand accesezi websiteul.
04:07
And I'm going to showspectacol you what PatientsPacienţii Like Me,
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Si va voi arata ce "Patients like me" ("Pacienti ca mine"),
04:10
the companycompanie that myselfeu insumi, my youngestcel mai tânăr brotherfrate
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compania pe care eu, fratele meu mai mic,
04:12
and a good friendprieten from MITMIT starteda început.
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si un prieten bun de la MIT am deschis-o.
04:14
Here are the actualreal patientspacienți, there are 45,000 of them now,
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Aici sunt chiar pacientii, sunt 45.000 acum,
04:17
sharingpartajare theiral lor storiespovestiri as datadate.
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impartasind povestile lor ca date.
04:19
Here is an M.S. patientrabdator.
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Aici este un pacient de M.S.
04:21
His nameNume is MikeMike, and he is uniformlyuniform impairedafectarea
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Numele lui este Mike, si are abilitati diminuate uniform,
04:23
on cognitioncunoaștere, visionviziune, walkingmers, sensationsenzaţie.
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de perceptie, vedere, mers, senzatii.
04:26
Those are things that are differentdiferit for eachfiecare M.S. patientrabdator.
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Aceste lucruri sunt diferite pentru fiecare pacient M.S.
04:28
EachFiecare of them can have a differentdiferit characteristiccaracteristică.
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Fiecare poate avea caracteristici diferite.
04:30
You can see fibromyalgiafibromialgie, HIVHIV, ALSALS, depressiondepresiune.
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Se pot vedea fibromialgie, HIV, ALS, depresie.
04:35
Look at this HIVHIV patientrabdator down here, ZinnyIrina.
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Uitati-va la acest pacient cu HIV, Zinny.
04:38
It's two yearsani of this diseaseboală. All of the symptomssimptome 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 workinglucru to keep his CDCD-UL4 countnumara highînalt
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Dar lucreaza sa-si tina CD4 sus
04:43
and his viralvirale levelnivel lowscăzut 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 aggregateagregat this and you can discoverdescoperi things about treatmentstratamente.
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Dar poti agrega asta si descoperi lucruri despre tratamente.
04:50
Look at this, 2,000 people almostaproape, on CopaxoneCopaxone.
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Priviti, aproape 2.000 de oameni, pe Copaxone.
04:52
These are patientspacienți currentlyîn prezent on drugsdroguri,
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Momentan, sunt pacienti pe medicamente,
04:54
sharingpartajare datadate.
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impartindu-si datele.
04:56
I love some of these, physicalfizic exerciseexercițiu, prayerrugăciune.
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Imi plac cateva din aceasta exercitii fizice, ruga.
04:59
AnyoneOricine want to runalerga a comparativecomparativă effectivenesseficacitate studystudiu
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Vrea cineva sa faca un studiu comparativ de efect
05:01
on prayerrugăciune againstîmpotriva something? Let's look at prayerrugăciune.
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a rugii contra ceva? Sa ne uitam la rugă.
05:03
What I love about this, just sortfel of interestinginteresant designproiecta problemsProbleme.
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Ce imi place la asta, doar cateva probleme interesante de model.
05:07
These are why people prayruga.
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De asta se roaga oamenii.
05:09
Here is the scheduleprograma of how frequentlydes they -- it's a dosedoza.
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Aici este programul cu cat de frecvent se roaga -- Este o doza.
05:11
So, anyoneoricine want to see the 32 patientspacienți that prayruga for 60 minutesminute 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 probablyprobabil 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 opendeschis networkreţea,
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Aici sunt. Sau, este o retea deschisa.
05:19
everybodytoata lumea is sharingpartajare. We can see it all.
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Toata lumea impartaseste. Putem vedea totul.
05:22
Or, I want to look at anxietyanxietate, because people are prayingrugăciune for anxietyanxietate.
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Sau, vreau sa ma uit la anxietate, pentru ca oamenii se roaga pentru anxietate.
05:25
And here is datadate on 15,000 people'soamenii lui currentactual anxietyanxietate, right now.
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Si aici sunt datele a anxietatii a 15.000 de oameni, chiar acum.
05:30
How they treattrata it,
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Cum o trateaza,
05:33
the drugsdroguri, the componentscomponente of it,
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medicamentele, componentele lor,
05:36
theiral lor sidelatură effectsefecte, all of it in a richbogat environmentmediu inconjurator,
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efectele adverse, toate acestea intr-un mediu bogat,
05:39
and you can drillburghiu down and see the individualspersoane fizice.
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si puteti sa accesati si sa vedeti indivizii.
05:41
This amazinguimitor datadate allowspermite us to drillburghiu down and see
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Aceste date uimitoare ne permit sa accesam si sa vedem
05:44
what this drugmedicament is for --
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pentru ce este acest medicament.
05:47
1,500 people on this drugmedicament, I think. Yes.
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1.500 de oameni cu acest medicament. Da.
05:49
I want to talk to the 58 patientspacienți down here
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Vreau sa vorbesc cu cei 58 de pacienti de aici
05:51
who are takingluare fourpatru milligramsmiligrame a day.
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care iau 4 miligrame pe zi.
05:53
And I want to talk to the onescele 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 yearsani.
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pentru mai mult de 2 ani.
06:01
So, you can see the durationdurată.
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Deci, puteti sa vedeti durata.
06:03
All opendeschis, all availabledisponibil.
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Totul deschis, totul disponibil.
06:07
I'm going to logButuruga in.
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Ma voi loga.
06:11
And this is my brother'sfratele lui profileprofilul.
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Si acesta este profilul fratelui meu.
06:13
And this is a newnou versionversiune of our platformplatformă we're launchinglansare right now.
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Si aceasta este noua versiunii a platformei pe care o lansam acum.
06:17
This is the secondal doilea generationgeneraţie. It's going to be in FlashFlash.
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Aceasta este a doua generatie. Va fi pe Flash.
06:19
And you can see here, as this animatesanima over,
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Si puteti vedea aici, in timp ce se animeaza,
06:22
Steven'sSteven pe actualreal datadate againstîmpotriva the backgroundfundal of all other patientspacienți,
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datele lui Steven comparativ cu istoria tuturor pacientilor,
06:25
againstîmpotriva this informationinformație.
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comparat cu aceasta informatie.
06:28
The bluealbastru bandgrup is the 50thlea percentilepercentilă. StevenSteven is the 75thlea percentilepercentilă,
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Banda albastra este percentila de 50. Steven este percentila de 75,
06:30
that he has non-geneticnon-genetice ALSALS.
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intrucat are ALS nongenetic.
06:33
You scrollsul down in this profileprofilul and you can see
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Derulati in jos profilul sau si puteti vedea
06:35
all of his prescriptionreteta medicala drugsdroguri,
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toate medicamentele prescrise pentru el,
06:37
but more than that, in the newnou versionversiune, I can look at this interactivelyinteractiv.
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dar si mai mult, in aceasta noua versiune, ma pot uita la asta intr-un mod interactiv.
06:40
Wait, poorsărac spinalspinal capacitycapacitate.
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Asteptati, capacitate spinala mica.
06:42
Doesn't this remindreaminti you of a great stockstoc programprogram?
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Nu va aminteste de un program minunat de stocare?
06:44
Wouldn'tNu s-ar it be great if the technologytehnologie we used to take careîngrijire of ourselvesnoi insine
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Nu ar fi minunat daca tehnologia folosita pentru a avea grija de noi
06:46
was as good as the technologytehnologie we use to make moneybani?
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ar fi la fel de buna ca si cea folosita cand facem bani?
06:49
DetrolDetrol. In the sidelatură effectsefecte for his drugmedicament,
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Detrol. In efectele adverse pentru acest medicament,
06:51
integratedintegrat into that, the stemtijă cellcelulă transplanttransplant de 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 worldlume, sharedimpartit openlydeschis for anyoneoricine 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 cyberkineticscyberkinetics implantimplant,
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Imi place aici, implantul de cyberkinetics,
07:01
whichcare was, again, the only patient'spacientului datadate that was onlinepe net and availabledisponibil.
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care a fost, iarasi, singura informatie a pacientului online si disponibila,
07:05
You can adjustregla the time scalescară. You can adjustregla the symptomssimptome.
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Puteti ajusta scara timpului. Puteti ajusta simptomele.
07:07
You can look at the interactioninteracţiune betweenîntre how I treattrata my ALSALS.
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Puteti sa va uitati la interactiunea dintre cum tratez ALS-ul meu.
07:11
So, you clickclic down on the ALSALS tabfila there.
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Deci, apasati pe butonul ALS aici.
07:13
I'm takingluare threeTrei drugsdroguri to manageadministra it. Some of them are experimentalexperimental.
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Iau 3 medicamente pentru a-l tine sub control. Unele sunt experimentale.
07:16
I can look at my constipationconstipaţie, how to manageadministra it.
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Ma pot uita la constipatia mea, cum sa ma ocup de ea.
07:18
I can see magnesiummagneziu citratecitrat, and the sidelatură effectsefecte
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Pot vedea Magneziu Citrat. Si efectele adverse
07:20
from that drugmedicament all integratedintegrat in the time
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de la acel medicament toate integrate in timpul
07:22
in whichcare they're meaningfulplin de înțeles.
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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 coolmisto devicedispozitiv, I want to take this
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Nu vreau doar sa ma uit la acest dispozitiv interesant. Vreau sa iau
07:29
datadate and make something even better.
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datele si sa fac ceva si mai bun.
07:31
I want my brother'sfratele lui centercentru of the universeunivers and his symptomssimptome
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Vreau ca centrul universului fratelui meu si simptomele lui
07:34
and his drugsdroguri,
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si medicamentele lui,
07:37
and all of the things that interactinteracționa amongprintre those,
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si toate lucrurile care interactioneaza printre acestea,
07:39
the sidelatură effectsefecte, to be in this beautifulfrumoasa datadate galaxygalaxie
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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 understanda intelege 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 informationinformație
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Pentru a putea lua aceasta informatie
07:48
and go beyonddincolo just this simplesimplu modelmodel
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si sa mergem dincolo de acest model simplu
07:52
of what a recordrecord is.
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a ce este o arhiva.
07:55
I don't even know what a medicalmedical recordrecord is.
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Nici nu stiu ce este un raport medical.
07:57
I want to solverezolva a problemproblemă. I want an applicationcerere.
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Vreau sa rezolv o problema. Vreau o aplicatie.
07:59
So, can I take this datadate -- rearrangerearanja yourselftu,
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Pentru a putea lua aceasta informatie -- sa le rearanjati singuri,
08:02
put the symptomssimptome in the left, the drugsdroguri acrosspeste the toptop,
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sa puneti simptomele in stanga, medicamente sus,
08:04
tell me everything we know about StevenSteven and everyonetoata lumea elsealtfel,
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sa spuneti tot ce stim despre Steven si toti ceilalti,
08:06
and what interactsinteracţionează.
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si ce interactioneaza.
08:09
YearsAni after he's had these drugsdroguri,
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Ani dupa ce a avut aceste medicamenete,
08:11
I learnedînvățat that everything he did to manageadministra his excessexces salivasalivă,
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am aflat ca tot ce a facut pentru a-si tine sub control saliva in exces,
08:14
includinginclusiv some positivepozitiv sidelatură effectsefecte that camea venit from other drugsdroguri,
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inclusiv cateva efecte secundare pozitive ce au venit din alte medicamente,
08:17
were makingluare his constipationconstipaţie worsemai rau.
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ii faceau constipatia mai rea.
08:19
And if anyone'scineva pe ever had severesever constipationconstipaţie,
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Si daca cineva a avut constipatie severa,
08:21
and you don't understanda intelege how much of an impactefect 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 punjoc de cuvinte.
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da a fost calambur.
08:26
You're tryingîncercat to manageadministra these,
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Incerci sa tii sub control astea,
08:28
and this gridgrilă is availabledisponibil here,
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si aceasta grila este disponibila aici,
08:30
and we want to understanda intelege it.
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si vrem sa o intelegem.
08:33
No one'sunul e ever had this kinddrăguț of informationinformație.
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Nimeni nu a avut vreodata acest fel de informatie.
08:36
So, patientspacienți have this. We're for patientspacienți.
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Deci, pacientii au asta. Suntem aici pentru pacienti.
08:38
This is all about patientrabdator healthsănătate careîngrijire, there was no doctorsmedici on our networkreţea.
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Asta e doar despre ingijirea sanatatii pacientilor. Nu au fost doctori in reteaua noastra.
08:40
This is about the patientspacienți.
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Este vorba despre pacienti.
08:42
So, how can we take this and bringaduce them a toolinstrument
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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 engageangaja the medicalmedical systemsistem?
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cu care pot sa mearga inapoi si sa antreneze sistemul medical?
08:47
And we workeda lucrat hardgreu, 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 medicalmedical careîngrijire systemsistem,
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ce putem folosi in sistemul medical,
08:54
that everyonetoata lumea will understanda intelege?"
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ce va fi inteles de toata lumea?
08:56
So, the patientspacienți printimprimare it out,
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Deci, pacientii trag asta la imprimanta,
08:58
because hospitalsspitale usuallyde obicei blockbloc us
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pentru ca spitalele deobicei ne blocheaza
09:00
because they believe we are a socialsocial networkreţea.
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pentru ca cred ca suntem o retea sociala.
09:03
It's actuallyde fapt the mostcel mai used featurecaracteristică on the websitewebsite.
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Este de fapt cea mai folosita trasatura pe acest website.
09:05
DoctorsMedicii actuallyde fapt love this sheetfoaie, and they're actuallyde fapt really engagedangajat.
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Doctorii de fapt iubesc aceasta pagina, si sunt foarte implicati.
09:08
So, we wenta mers from this storypoveste of StevenSteven
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Deci, am mers de la aceasta poveste a lui Steven
09:11
and his historyistorie to datadate, and then back to paperhârtie,
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si istoria lui de date, si inapoi la pagina,
09:14
where we wenta mers back and engagedangajat the medicalmedical careîngrijire systemsistem.
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unde ne-am angajat intr-un sistem de ingrijire medicala.
09:15
And here'saici e anothero alta paperhârtie.
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Si aici este alta pagina.
09:17
This is a journaljurnal, PNASPNAS --
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Este un jurnal, PNAS.
09:19
I think it's the ProceedingsProceduri of the NationalNaţionale AcademyAcademia of ScienceStiinta
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Cred ca este Procedurile Academiei Nationale de Stiinte
09:21
of the UnitedMarea StatesStatele of AmericaAmerica.
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A Statelor Unite Ale Americii.
09:23
You've seenvăzut multiplemultiplu of these todayastăzi, when everyone'stoată lumea e bragginglăudăros about
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Ati vazut multe de aceste exemplare astazi, cand toata lumea lauda
09:25
the amazinguimitor things they'vele-au doneTerminat.
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lucrurile minunate facut de ei.
09:27
This is a reportraport about a drugmedicament calleddenumit lithiumlitiu.
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Acesta este un raport despre un medicament numit Lithium.
09:29
LithiumLitiu, that is a drugmedicament used to treattrata bipolarbipolar disordertulburare,
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Lithium, care este un medicament folosit sa trateze afectiuni bipolare,
09:33
that a groupgrup in ItalyItalia foundgăsite
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despre care un grup din Italia a aflat
09:35
slowedîncetinit ALSALS down in 16 patientspacienți, and publishedpublicat it.
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ce a incetinit ALS in 16 pacienti, si l-au publicat.
09:38
Now, we'llbine skipocolire the critiquescriticile of the paperhârtie.
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Acum, vom sari peste critica la adresa articolului.
09:40
But the shortmic de statura storypoveste is: If you're a patientrabdator,
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Dar povestea pe scurt este ca, daca esti pacient,
09:42
you want to be on the bluealbastru linelinia.
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vrei sa fii pe linia albastra.
09:44
You don't want to be on the redroșu linelinia, you want to be on the bluealbastru linelinia.
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Nu vrei sa fii pe linia rosie, vrei sa fii pe linia albastra.
09:46
Because the bluealbastru linelinia is a better linelinia. The redroșu linelinia
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Pentru ca linia albastra este una mai buna. Linia rosie
09:48
is way downhillla vale, the bluealbastru linelinia is a good linelinia.
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este prea joasa, linia albastra este o linie buna.
09:50
So, you know we said -- we lookedprivit at this, and what I love alsode asemenea
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Deci, am spus -- ne-am uitat la asta, si ce mi-a mai placut
09:54
is that people always accuseacuza these InternetInternet sitessite-uri
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e ca oamenii acuza intotdeauna aceste site-uri de internet
09:56
of promotingpromovarea badrău medicinemedicament and havingavând people do things irresponsiblyiresponsabil.
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de promovarea medicinei rele si determinarea oamenilor in a face ceva iresponsabil.
09:59
So, this is what happeneds-a întâmplat when PNASPNAS publishedpublicat this.
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Deci, asta s-a intamplat cand PNAS a publicat asta.
10:02
TenZece percentla sută of the people in our systemsistem tooka luat lithiumlitiu.
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10 la suta din oamenii din sistemul nostru a luat Lithium.
10:05
TenZece percentla sută of the patientspacienți starteda început takingluare lithiumlitiu basedbazat on 16 patientspacienți of datadate
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10 la suta din pacienti au inceput sa ia Lithium bazat pe datele a 16 pacienti
10:08
in a badrău publicationpublicare.
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intr-o publicatie rea.
10:10
And they call the InternetInternet irresponsibleiresponsabil.
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Si numesc internetul iresponsabil.
10:12
Here'sAici este the implicationimplicarea of what happensse întâmplă.
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Si aceasta este implicatia a celor ce s-au intamplat.
10:14
There's this one guy, namednumit HumbertoHumberto, from BrazilBrazilia,
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Si aici este un barbat, numit Humberto, din Brazilia,
10:17
who unfortunatelydin pacate passeda trecut away ninenouă monthsluni agoîn urmă,
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care din pacate a decedat acum 9 luni,
10:20
who said, "Hey, listen. Can you help us answerRăspuns this questionîntrebare?
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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 nextUrmător → trialproces, it's going to be yearsani.
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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 launcheda lansat some toolsunelte, we let them trackurmări theiral lor bloodsânge levelsniveluri.
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Asa ca, am lansat diferite instrumente, i-am lasat sa-si urmareasca nivelurile din sange.
10:30
We let them shareacțiune the datadate and exchangeschimb valutar it.
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I-am lasat sa-si impartaseasca datele.
10:32
You know, a datadate networkreţea.
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Stiti, o retea de informatii.
10:35
And they said, you know, "JamieJamie, PLMPLM,
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Si au spus: "Jamie, PLM,
10:37
can you guys tell us whetherdacă this workslucrări or not?"
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puteti sa ne spuneti daca aceasta functioneaza sau nu?"
10:39
And we wenta mers around and we talkeda vorbit 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 runalerga a clinicalclinic trialproces 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 blindingorbire, you don't have datadate,
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Nu ai datele,
10:45
it doesn't followurma the scientificștiințific methodmetodă.
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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 harderMai tare."
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Si, am spus "Bine. Pai, nu putem face asta, Atunci putem face ceva si mai greu."
10:52
(LaughterRâs)
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(Rasete)
10:55
I can't say whetherdacă lithiumlitiu workslucrări in all ALSALS patientspacienți,
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Nu pot spune daca Lithium functioneaza in toti pacientii cu ALS,
10:57
but I can say whetherdacă it workslucrări in HumbertoHumberto.
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dar pot spune daca lucreaza la Humberto.
11:00
I boughtcumparat a MacMac about two yearsani agoîn urmă, I convertedconvertit 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 excitedexcitat about this newnou featurecaracteristică of the time machinemaşină
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Si am fost atat de entuziasmat de noua functionalitate a masinariei in timp
11:04
that camea venit in LeopardLeopard. And we said -- because it's really coolmisto,
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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 entireîntreg historyistorie of your computercomputer,
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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 lostpierdut, and I lovediubit 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 builtconstruit a time machinemaşină for patientspacienți,
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Si am zis "Daca am construi o masinarie a timpului pentru pacienti,
11:14
exceptcu exceptia insteadin schimb of going backwardsînapoi, we go forwardsredirecţionează.
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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 happenîntâmpla to you,
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Putem afla ce se va intampla cu tine,
11:20
so that you can maybe changeSchimbare it?"
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in asa fel incat sa o schimbi?"
11:23
So, we did. We tooka luat all the patientspacienți like HumbertoHumberto,
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Si am facut asta. Am luat toti pacientii ca Humberto,
11:26
That's the AppleApple backgroundfundal, we stolefurat 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 buildconstrui our ownpropriu. This is a realreal appaplicaţia by the way.
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sa facem altul. Apropo, acesta este un program adevarat.
11:30
This is not just graphicsgrafică.
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Nu e doar grafica.
11:32
And you take those datadate, and we find the patientspacienți like him, and we bringaduce
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Si iei acele informatii, si gasim pacienti ca el, si imbinam
11:34
theiral lor datadate togetherîmpreună. And we bringaduce theiral lor historiesistorii into it.
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datele lor. Si aducem si istoria datelor lor.
11:38
And then we say, "Well how do we linelinia them all up?"
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Si apoi spunem "Ei bine. Cum le aliniem?"
11:40
So, we linelinia them all up so they go togetherîmpreună
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Asa ca, le aliniem in asa fel incat
11:42
around the meaningfulplin de înțeles pointspuncte,
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se imbina in puncte importante,
11:44
integratedintegrat acrosspeste everything we know about the patientrabdator.
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integrate prin tot ce stim despre pacient.
11:46
FullComplet informationinformație, the entireîntreg coursecurs of theiral lor diseaseboală.
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Informatii totale, intregul curs al bolii sale.
11:50
And that's what is going to happenîntâmpla to HumbertoHumberto,
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Si asta se va intampla si cu Humberto.
11:52
unlessdacă nu he does something.
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doar daca nu face ceva.
11:54
And he tooka luat lithiumlitiu, and he wenta mers down the linelinia.
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Si a luat Lithium, si a mers pana in josul liniei.
11:57
And it workslucrări almostaproape everyfiecare time.
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Si lucreaza aproape intotdeauna.
12:00
Now, the onescele that it doesn't work are interestinginteresant.
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Acum, cele care nu functioneaza sunt interesante.
12:02
But almostaproape all the time it workslucrări.
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Dar aproape intotdeauna functioneaza.
12:05
It's actuallyde fapt scaryinfricosator. It's beautifulfrumoasa.
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Este infricosator chiar, este frumos.
12:07
So, we couldn'tnu a putut runalerga a clinicalclinic trialproces, we couldn'tnu a putut figurefigura it out.
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Deci, nu am putut face o cercetare clinica, nu stiam cum.
12:09
But we could see whetherdacă it was going to work for HumbertoHumberto.
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Dar puteam vedea daca va functiona la Humberto.
12:12
And yeah, all the cliniciansclinicienii in the audiencepublic will talk about powerputere
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Si da, toate clinicienii din public vor vorbi de putere
12:14
and all the standardstandard deviationAbaterea. We'llVom do that latermai tarziu.
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si toate deviatiile de standard. Vom face asta mai tarziu.
12:16
But here is the answerRăspuns
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Dar aici este raspunsul
12:20
of the mean of the patientspacienți that actuallyde fapt decideda decis
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mediei pacientilor care chiar au decis
12:22
to take lithiumlitiu.
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sa ia Lithium.
12:24
These are all the patientspacienți that starteda început lithiumlitiu.
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Aici sunt pacientii care au inceput Lithium.
12:26
It's the IntentIntenţia to TreatTrata CurveCurba.
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Are intentia de a trata curba.
12:28
You can see here, the bluealbastru dotspuncte on the toptop, the lightușoară onescele,
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Si puteti vedea aici, punctele albastre, cele deschise,
12:32
those are the people in the studystudiu in PNASPNAS
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acestea cum oamenii in studiul PNAS
12:34
that you wanted to be on. And the redroșu onescele are the onescele,
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care ati vrea sa fiti. Si cele rosii sunt cele,
12:36
the pinkroz onescele on the bottomfund are the onescele 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 onescele in the middlemijloc are all of our patientspacienți
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Si cele din mijloc sunt toti pacientii nostri
12:41
from the startstart of lithiumlitiu at time zerozero,
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de la inceputul Lithiumului la timpul 0,
12:43
going forwardredirecţiona, and then going backwarddesiş de pădure.
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mergand inainte, si apoi mergand inapoi.
12:47
So, you can see we matchedpotrivire them perfectlyperfect, perfectlyperfect.
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Deci, puteti vedea ca le-a potrivit perfect, perfect.
12:50
TerrifyinglyTerrifyingly accurateprecis matchingpotrivire.
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O potrivire infricosator de exacta.
12:52
And going forwardredirecţiona, you actuallyde fapt don't want to be a lithiumlitiu patientrabdator this time.
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Si mergand inainte, nu vrei sa fii un pacient Lithium de data asta.
12:56
You're actuallyde fapt doing slightlypuțin worsemai rau -- not significantlysemnificativ,
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Chiar te simti un pic mai rau, nu in mod semnificativ,
12:58
but slightlypuțin worsemai rau. You don't want to be a lithiumlitiu patientrabdator 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 droppedscăzut out,
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Dar stiti, multi au renuntat,
13:04
the trialproces, there is too much dropcădere brusca out.
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cercetarea, sunt prea multe abandonari.
13:06
Can we do the even harderMai tare thing? Can we go to the patientspacienți
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Putem face lucrul si mai greu? Putem merge la pacientii
13:08
that actuallyde fapt decideda decis to staystau on lithiumlitiu,
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care au decis sa continue cu Lithium,
13:12
because they were so convincedconvins they were gettingobtinerea better?
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pentru ca erau convinsi ca le mergea mai bine.
13:14
We askedîntrebă our controlControl algorithmAlgoritmul,
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Si am intrebat algoritmul de control,
13:16
are those 69 patientspacienți -- by the way, you'llveți noticeînștiințare
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sunt acei 69 de pacienti, apropo veti observa
13:18
that's fourpatru timesori the numbernumăr of patientspacienți in the clinicalclinic trialproces --
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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 patientspacienți and say,
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putem sa ne uitam la acesti pacienti si sa spunem,
13:24
"Can we matchMeci them with our time machinemaşină
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"Putem sa-i potrivim cu masinarie noastra a timpului
13:27
to the other patientspacienți that are just like them,
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a altor pacienti care sunt la fel ca ei,
13:29
and what happensse întâmplă?"
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si ce se intampla?"
13:31
Even the onescele that believeda crezut they were gettingobtinerea better
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Si chiar cei care credeau sa se fac mai bine,
13:34
matchedpotrivire the controlscontroale exactlyexact. ExactlyExact.
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s-au potrivit exact cu comanda. Exact.
13:37
Those little lineslinii? That's the powerputere.
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Si acele linioare? Aceea este puterea.
13:39
So, we -- I can't tell you lithiumlitiu 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 highersuperior dosedoza
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ca daca nu iei un dozaj mai mare
13:43
or if you runalerga the studystudiu properBuna -- I can tell you
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faci cercetarea cum trebuie, iti pot spune
13:45
that for those 69 people that tooka luat lithiumlitiu,
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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 powerputere to detectdetecta that at about
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si ca avem puterea sa detectam cu aproape
13:56
a quartersfert of the strengthspunctele forte reportedraportat in the initialiniţială studystudiu.
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un sfert din puterile comunicate in studiul initial.
13:59
We did that one yearan aheadînainte of the time
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Si am facut asta cu un an inainte de timpul
14:02
when the first clinicalclinic trialproces fundedfinanțat by the NIHNIH
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cand prima cercetare clinica a fost finantata de NIH
14:04
for millionsmilioane of dollarsdolari faileda eșuat for futilityinutilitatea last weeksăptămână,
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pentru milioane de dolari, a dat gres pentru inutilitate saptamana trecuta,
14:07
and announceda anunțat it.
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si au anuntat-o.
14:10
So, remembertine minte I told you about my brother'sfratele lui stemtijă cellcelulă transplanttransplant de.
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Si, va amintiti ca v-am spus de transplantul de celule stem a fratelui meu.
14:13
I never really knewștiut whetherdacă it workeda lucrat.
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Nu am stiut niciodata daca va functiona.
14:16
And I put 100 millionmilion cellscelulele in his cisternaCisterna magnaMagna,
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Si am pus 100 milioane de celule in cisterna magna,
14:19
in his lumbarlombara cordcordon,
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in cordul sau lombar,
14:21
and filledumplut out the IRBsIRBs and did all this work,
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si am facut toate IRB-urile si toata munca,
14:23
and I never really knewștiut.
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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 happenîntâmpla to him.
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Adica, nu stiam ce se va intampla cu el.
14:30
I actuallyde fapt askedîntrebă TimTim, who is the quantQuant in our groupgrup --
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Si chiar l-am intrebat pe Tim, care e analistul numeric in grupul nostru --
14:33
we actuallyde fapt searchedcautat for about a yearan to find someonecineva
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Chiar am cautat timp de un an pe cineva
14:36
who could do the sortfel of mathmatematica and statisticsstatistici and modelingmodelare
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care ar putea sa faca matematica si statisticele si modelatul
14:38
in healthcaresănătate, couldn'tnu a putut find anybodycineva. So, we wenta mers to the financefinanţa industryindustrie.
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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 modelmodel the futureviitor
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Si acolo sunt acesti barbati care obisnuiau sa modeleze viitorul
14:43
of interestinteres ratestarife, and all that kinddrăguț of stuffchestie.
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a cursurilor dobanzilor, si toate lucrurile de genul ala.
14:45
And some of them were availabledisponibil. So, we hiredangajat one.
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Si cativa erau disponibili. Asa ca am angajat unul.
14:48
(LaughterRâs)
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(Rasete)
14:51
We hiredangajat them, seta stabilit them up, assistingasistarea at lablaborator.
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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 communicatecomunica with him,
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Eu I.M. el lucruri. Asa comunic cu el
14:55
is like a little guy in a boxcutie. I I.M.edEd TimTim. I said,
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e ca un mic om intr-o cutie. Am spus,
14:57
"TimTim can you tell me whetherdacă my brother'sfratele lui stemtijă cellcelulă transplanttransplant de
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"Tim, imi poti spune daca transplantul de celule stern a fratelui meu
14:59
workeda lucrat or not?"
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a functionat sau nu?
15:02
And he senttrimis me this two dayszi agoîn urmă.
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Si mi-a trimis asta cu 2 zile in urma.
15:05
It was that little outliersaberante there. You see that guy that livedtrăit 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 happeneds-a întâmplat.
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Trebuie sa vorbim cu el. Pentru ca mi-ar placea sa stiu ce s-a intamplat.
15:10
Because something wenta mers differentdiferit.
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Pentru ca ceva a mers diferit.
15:12
But my brotherfrate didn't. My brotherfrate wenta mers straightdrept down the linelinia.
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Dar fratele meu nu. Fratele meu a mers direct in josul liniei.
15:15
It only workslucrări about 12 monthsluni.
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Functioneaza doar 12 luni.
15:17
It's the first versionversiune of the time machinemaşină.
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Este prima versiune a masinariei in timp.
15:19
First time we ever triedîncercat it. We'llVom try to get it better latermai tarziu
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Prima data cand am incercat-o. Vom incerca sa o imbunatatim mai tarziu.
15:21
but 12 monthsluni so fardeparte.
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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 emotionalemoţional.
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si devin foarte emotional.
15:30
You look at the patientspacienți, you can drillburghiu in all the controlscontroale,
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Te uiti la pacienti. Puteti folosi toate controalele.
15:32
you can look at them, you can askcere them.
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Te poti uita la ei, ii puteti intreba.
15:34
And I foundgăsite a womanfemeie that had --
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Si am gasit o femeie care a avut --
15:37
we foundgăsite her, she was oddciudat because she had datadate
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Am gasit-o, era ciudat pentru ca avea informatiile
15:39
after she dieddecedat.
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dupa ce a murit.
15:41
And her husbandsoț had come in and entereda intrat her last functionalfuncţional scoresscoruri,
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Si sotul ei a venit si a introdus ultimele punctaje functionale,
15:44
because he knewștiut how much she caredîngrijit.
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pentru ca stia cat de mult a tinut ea la asta.
15:47
And I am thankfulrecunoscător.
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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
yearsani after my brotherfrate had dieddecedat,
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ani dupa decesul fratelui meu,
15:54
helpeda ajutat me answerRăspuns the questionîntrebare about whetherdacă
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m-au ajutat sa raspund la intrebarea despre
15:56
an operationoperație I did, and spenta petrecut millionsmilioane of dollarsdolari on
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succesul unei operatii facute si in care am investit
15:59
yearsani agoîn urmă, workeda lucrat or not.
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milioane de dolari acum cativa ani.
16:01
I wisheddorit it had been there
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Si as fi vrut sa fie acolo
16:03
when I'd doneTerminat it the first time,
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cand am facut-o prima data.
16:05
and I'm really excitedexcitat that it's here now,
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Si sunt foarte entuziasmat ca e aici acum.
16:07
because the lablaborator that I foundedfondat
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Pentru ca laboratorul pe care l-am infiintat
16:12
has some datadate on a drugmedicament that mightar putea work,
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are informatii despre un medicament care ar putea sa functioneze.
16:14
and I'd like to showspectacol it.
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Si as vrea sa-l arat.
16:18
I'd like to showspectacol it in realreal 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 diseasesboli 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 socialsocial experimentexperiment with us.
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care fac acest experiment social cu noi.
16:31
There is an amazinguimitor journeycălătorie we are going on
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Este o calatorie uimitoare prin care mergem
16:34
to becomedeveni humanuman again,
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pentru a deveni umani iarasi,
16:36
to be partparte of communitycomunitate again,
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pentru a face parte din comunitate iarasi,
16:39
to shareacțiune of ourselvesnoi insine, to be vulnerablevulnerabil,
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sa impartasim din noi, sa fim vulnerabili,
16:41
and it's very excitingemoționant. So, thank you.
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si este foarte captivant. Deci, va multumesc.
16:44
(ApplauseAplauze)
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(Aplauze)
Translated by Delia Halici
Reviewed by Brandusa Gheorghe

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ABOUT THE SPEAKER
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.

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.

More profile about the speaker
Jamie Heywood | Speaker | TED.com