TEDMED 2009
Jamie Heywood: The big idea my brother inspired
Džejmi Hejvud (Jamie Heywood): Velika ideja koju je moj brat inspirisao
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Kada je bratu Džejmija Hejvuda dijagnostikovan ALS, posvetio je svoj život i borbi protiv ove bolesti. Hejvud braća su napravila genijalan sajt, gde ljudi mogu da učestvuju u razmeni i praćenju podataka o svojim bolestima -- i otkrili su da zajednički podaci imaju neverovatnu snagu da uteše, objasne i predvide.
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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Kada me je brat u decembru 1998. nazvao,
00:18
he said, "The news does not look good."
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rekao je: “Vesti nisu dobre.”
00:20
This is him on the screen.
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Ovo je on na ekranu.
00:22
He'd just been diagnosed with ALS,
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Upravo su mu postavili dijagnozu ALS-a,
00:24
which is a disease that the average lifespan is three years.
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bolesti kod koje je prosečno preživljavanje tri godine.
00:28
It paralyzes you. It starts by killing
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Ona vas parališe. Počinje uništavanjem
00:30
the motor neurons in your spinal cord.
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motornih neurona u vašoj kičmenoj moždini.
00:33
And you go from being a healthy,
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I vi od zdravog,
00:35
robust 29-year-old male
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snažnog 29-godišnjeg muškarca postanete
00:38
to someone that cannot breathe,
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neko ko ne može da diše,
00:40
cannot move, cannot speak.
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ne može da se kreće, ne može da govori.
00:46
This has actually been, to me, a gift,
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Ovo je, u stvari, za mene bio poklon,
00:50
because we began a journey
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krenuli smo na put na kojem ćemo
00:53
to learn a new way of thinking about life.
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naučiti da o životu razmišljamo na nov način.
00:56
And even though Steven passed away three years ago
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Iako je Stiven preminuo pre tri godine,
01:00
we had an amazing journey as a family.
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kao porodica smo prešli neverovatan put.
01:02
We did not even --
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Nije samo da smo
01:05
I think adversity is not even the right word.
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imali poteškoće, to nije dovoljno reći.
01:07
We looked at this and we said, "We're going to do something with this
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Gledali smo na to kao na nešto što
01:10
in an incredibly positive way."
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ćemo iskoristiti na pozitivan način.
01:12
And I want to talk today
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Danas želim da govorim
01:14
about one of the things that we decided to do,
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o jednoj od stvari koju smo odlučili da uradimo,
01:17
which was to think about a new way of approaching healthcare.
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a to je da osmislimo nov pristup zdravstvenom sistemu.
01:21
Because, as we all know here today,
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Budući da, kao što svi znamo,
01:23
it doesn't work very well.
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on ne funkcioniše dobro.
01:25
I want to talk about it in the context of a story.
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O tome želim da govorim u kontekstu priče.
01:28
This is the story of my brother.
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Ovo je priča mog brata.
01:30
But it's just a story. And I want to go beyond the story,
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Ali, to je samo priča. Želim da odem iza te priče
01:33
and go to something more.
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u nešto veće.
01:35
"Given my status, what is the best outcome
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"Imajući u vidu moje stanje, koji je najbolji ishod
01:38
I can hope to achieve, and how do I get there?"
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kojem mogu da se nadam i kako da ga postignem?"
01:41
is what we are here to do in medicine, is what everyone should do.
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To je ono što se radi u medicini, što svi treba da radimo.
01:44
And those questions all have variables to them.
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Sva ta pitanja imaju svoje promenljive.
01:46
All of our statuses are different.
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Svako od nas ima različit status.
01:48
All of our hopes and dreams, what we want to accomplish,
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Sve naše nade i snovi, ono što želimo da postignemo
01:50
is different, and our paths will be different,
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je drugačije i naši putevi će biti različiti,
01:52
they are all stories.
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sve su to priče.
01:54
But it's a story until we convert it to data
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Ali to ostaje priča dok je ne pretvorimo u podatke,
01:56
and so what we do, this concept we had,
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i ono što radimo, ideja koju smo imali je
01:58
was to take Steven's status, "What is my status?"
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da pođemo od Stivenovog stanja: “Kakvo je moje stanje?”,
02:01
and go from this concept of walking, breathing,
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da krenemo od koncepta hodanja, disanja,
02:06
and then his hands, speak,
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zatim upotrebe šaka i govora
02:09
and ultimately happiness and function.
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i konačno do njegovog zadovoljstva i smisla života.
02:13
So, the first set of pathologies, they end up in the stick man
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Dakle, krenemo od slabosti, one se postave na ovaj crtež,
02:15
on his icon,
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na njegovu ikonicu,
02:17
but the rest of them are really what's important here.
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ali sve ostalo je ono što je ovde zaista bitno.
02:20
Because Steven, despite the fact that he was paralyzed,
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Jer Stiven je, i pored toga što je bio paralizovan
02:23
as he was in that pool, he could not walk,
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kao što je u ovom bazenu, kada nije mogao da hoda
02:26
he could not use his arms -- that's why he had the little floaty things on them,
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ili da koristi svoje ruke -- zbog čega ima ove
male plutajuće stvari na njima,
male plutajuće stvari na njima,
02:28
did you see those? --
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da li ste ih videli? --
02:30
he was happy. We were at the beach,
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bio srećan. Bili smo na plaži,
02:32
he was raising his son, and he was productive.
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odgajao je svog sina, stvarao je.
02:34
And we took this, and we converted it into data.
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To smo uzeli i pretvorili u podatak.
02:39
But it's not a data point at that one moment in time.
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Ali to nije jedan podatak u jednom trenutku.
02:41
It is a data point of Steven in a context.
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To je podatak o Stivenu vezan za kontekst.
02:43
Here he is in the pool. But here he is healthy,
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Ovde je u bazenu. Ali ovde je zdrav,
02:45
as a builder: taller, stronger,
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kao preduzimač: viši, snažniji,
02:48
got all the women, amazing guy.
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dobijao je sve žene, neverovatan momak.
02:50
Here he is walking down the aisle,
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Ovde ide prema oltaru,
02:52
but he can barely walk now, so it's impaired.
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ali sada jedva hoda, znači postoji slabost.
02:55
And he could still hold his wife's hand, but he couldn't do buttons on his clothes,
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I dalje je mogao da drži svoju ženu za ruku,
ali nije mogao da se zakopča,
ali nije mogao da se zakopča,
02:57
can't feed himself.
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nije mogao sam da jede.
02:59
And here he is, paralyzed completely,
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Evo ga ovde, potpuno oduzet,
03:01
unable to breathe and move, over this time journey.
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nesposoban da diše i da se kreće,
u ovom vremenskom pregledu.
u ovom vremenskom pregledu.
03:03
These stories of his life, converted to data.
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Ove priče njegovog života su pretvorene u podatke.
03:06
He renovated my carriage house
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Renovirao je moju zgradu za kočije
03:08
when he was completely paralyzed, and unable to speak,
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dok je bio potpuno paralizovan, nije mogao da govori,
03:10
and unable to breathe, and he won an award for a historic restoration.
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ni da diše, a osvojio je nagradu za istorijsku restauraciju.
03:16
So, here's Steven alone, sharing this story in the world.
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Ovde je Stiven sam, nesebično deleći
svoju priču sa drugima.
svoju priču sa drugima.
03:18
And this is the insight, the thing that we are
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A ovo je sagledavanje zbog kojeg
03:21
excited about,
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smo uzbuđeni,
03:23
because we have gone away from the community that we are,
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jer smo se udaljili od zajednice kakva jesmo,
03:26
the fact that we really do love each other and want to care for each other.
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od toga da zaista volimo jedni druge
i želimo da brinemo jedni o drugima.
i želimo da brinemo jedni o drugima.
03:29
We need to give to others to be successful.
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Moramo davati drugima da bismo bili uspešni.
03:31
So, Steven is sharing this story,
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Tako Stiven učestvuje sa svojom pričom,
03:34
but he is not alone.
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ali nije usamljen.
03:36
There are so many other people sharing their stories.
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Postoje mnogi drugi ljudi koji dele svoje priče.
03:38
Not stories in words, but stories in data and words.
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Ne priče u rečima, nego priče u podacima i rečima.
03:41
And we convert that information into this structure,
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Tu informaciju pretvaramo u ovu strukturu,
03:44
this understanding, this ability to convert
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ovo razumevanje, ovo svojstvo pretvaranja
03:47
those stories into something that is computable,
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njihovih priča u nešto merljivo,
03:49
to which we can begin to change the way
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u nešto čime možemo da započnemo promenu načina
03:51
medicine is done and delivered.
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kako se lečenje izvodi i sprovodi.
03:53
We did this for ALS. We can do this for depression,
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Uradili smo to za ALS. Isto možemo uraditi za depresiju,
03:55
Parkinson's disease, HIV.
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Parkinsonovu bolest, HIV.
03:57
These are not simple, they are not internet scalable;
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Ove konverzije nisu jednostavne,
ne mogu se meriti na internetu;
ne mogu se meriti na internetu;
03:59
they require thought and processes
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one zahtevaju razmišljanje i postupke
04:01
to find the meaningful information about the disease.
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da bi se pronašla značajna informacija o ovim bolestima.
04:04
So, this is what it looks like when you go to the website.
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Ovako izgleda kad odete na sajt.
04:07
And I'm going to show you what Patients Like Me,
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Pokazaću vam šta je “Patients Like Me”,
04:10
the company that myself, my youngest brother
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kompanija koju sam osnovao sa najmlađim bratom
04:12
and a good friend from MIT started.
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i dobrim prijateljem sa Instituta za tehnologiju Masačusetsa.
04:14
Here are the actual patients, there are 45,000 of them now,
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Ovde su stvarni pacijenti, sada ih ima oko 45 000
04:17
sharing their stories as data.
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i oni učestvuju sa svojim pričama
koje su pretvorene u podatke.
koje su pretvorene u podatke.
04:19
Here is an M.S. patient.
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Ovde je pacijent oboleo od MS-a (multiple skleroze).
04:21
His name is Mike, and he is uniformly impaired
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Zove se Majk i ima podjednako oštećene
04:23
on cognition, vision, walking, sensation.
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kogniciju, vid, hod, senzibilitet.
04:26
Those are things that are different for each M.S. patient.
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To je različito za svakog obolelog od MS-a.
04:28
Each of them can have a different characteristic.
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Svaki od njih može da ima različite osobine.
04:30
You can see fibromyalgia, HIV, ALS, depression.
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Možete videti fibromialgiju, HIV, ALS, depresiju.
04:35
Look at this HIV patient down here, Zinny.
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Pogledajte ovog obolelog od HIV-a, Zini.
04:38
It's two years of this disease. All of the symptoms are not there.
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Ovo je druga godina trajanja bolesti.
Još nema sve simptome.
Još nema sve simptome.
04:41
But he is working to keep his CD4 count high
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Ali radi na tome da održi visoke vrednosti CD4
04:43
and his viral level low so he can make his life better.
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i titar virusa niskim, da bi mogao da živi bolje.
04:46
But you can aggregate this and you can discover things about treatments.
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Ali ovo možete da objedinite i otkrijete ponešto o lečenjima.
04:50
Look at this, 2,000 people almost, on Copaxone.
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Pogledajte ovo, skoro 2 000 obolelih uzima Kopakson.
04:52
These are patients currently on drugs,
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Ovo su pacijenti koji su sada na lekovima
04:54
sharing data.
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i dele podatke.
04:56
I love some of these, physical exercise, prayer.
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Volim neke od ovih, fizičko vežbanje, molitva.
04:59
Anyone want to run a comparative effectiveness study
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Da li neko želi da radi komparativnu studiju efikasnosti
05:01
on prayer against something? Let's look at prayer.
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molitve u odnosu na nešto drugo? Pogledajmo molitvu.
05:03
What I love about this, just sort of interesting design problems.
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Ono što volim u vezi s ovim, samo izmislite
kao zanimljive probleme.
kao zanimljive probleme.
05:07
These are why people pray.
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Ovo su razlozi zašto se ljudi mole.
05:09
Here is the schedule of how frequently they -- it's a dose.
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Ovde je raspored koliko se često mole -- to je doza.
05:11
So, anyone want to see the 32 patients that pray for 60 minutes a day,
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Da li neko želi da vidi da li se ova 32 pacijenta,
05:14
and see if they're doing better, they probably are.
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koji se mole 60 minuta dnevno, osećaju bolje, verovatno da.
05:16
Here they are. It's an open network,
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Evo ih ovde. To je otvorena mreža,
05:19
everybody is sharing. We can see it all.
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svako učestvuje sa podacima. Možemo sve da vidimo.
05:22
Or, I want to look at anxiety, because people are praying for anxiety.
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Ili želim da proučavam anksioznost, jer
ljudi se mole zbog anksioznosti.
ljudi se mole zbog anksioznosti.
05:25
And here is data on 15,000 people's current anxiety, right now.
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Ovde su podaci o trenutnoj anksioznosti 15 000 ljudi.
05:30
How they treat it,
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Kako je leče,
05:33
the drugs, the components of it,
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kojim lekovima, kojim sastojcima,
05:36
their side effects, all of it in a rich environment,
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njihovi neželjeni efekti, sve to u različitim životnim prilikama,
05:39
and you can drill down and see the individuals.
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koje možete proučavati do pojedinaca.
05:41
This amazing data allows us to drill down and see
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Ovi neverovatni podaci vam dozvoljavaju da dođete
05:44
what this drug is for --
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do upotrebe ovog leka --
05:47
1,500 people on this drug, I think. Yes.
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mislim da je 1 500 ljudi na ovom leku. Da.
05:49
I want to talk to the 58 patients down here
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Želim da razgovaram sa ovih 58 pacijenata
05:51
who are taking four milligrams a day.
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koji uzimaju četiri miligrama dnevno.
05:53
And I want to talk to the ones of those that have been doing
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Želim da razgovaram samo sa onima koji uzimaju tu dozu
05:55
it for more than two years.
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duže od dve godine.
06:01
So, you can see the duration.
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Prema tome, možete videti trajanje.
06:03
All open, all available.
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Sve je otvoreno, sve je dostupno.
06:07
I'm going to log in.
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Sada ću se ulogovati.
06:11
And this is my brother's profile.
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Ovo je profil mog brata.
06:13
And this is a new version of our platform we're launching right now.
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Ovo je nova verzija naše platforme
koju upravo sada puštamo.
koju upravo sada puštamo.
06:17
This is the second generation. It's going to be in Flash.
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To je druga generacija. Biće u Flashu.
06:19
And you can see here, as this animates over,
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Ovde možete videti, preko ovih animacija,
06:22
Steven's actual data against the background of all other patients,
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Stivenove stvarne podatke nasuprot
pozadine koju čine svi drugi pacijenti,
pozadine koju čine svi drugi pacijenti,
06:25
against this information.
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u poređenju sa tom informacijom.
06:28
The blue band is the 50th percentile. Steven is the 75th percentile,
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Plava traka je 50 posto. Stiven je na 75 posto,
06:30
that he has non-genetic ALS.
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pošto ima negenetski ALS.
06:33
You scroll down in this profile and you can see
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Pregledajući taj profil možete da vidite
06:35
all of his prescription drugs,
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sve njegove prepisane lekove,
06:37
but more than that, in the new version, I can look at this interactively.
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ali više od toga, u ovoj novoj verziji,
mogu da pregledam interaktivno.
mogu da pregledam interaktivno.
06:40
Wait, poor spinal capacity.
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Sačekajte, slabost leđa.
06:42
Doesn't this remind you of a great stock program?
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Zar vas ovo ne podseća na veliki program akcija?
06:44
Wouldn't it be great if the technology we used to take care of ourselves
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Zar ne bi bilo sjajno kada bi tehnologija,
koju koristimo za brigu o sebi,
koju koristimo za brigu o sebi,
06:46
was as good as the technology we use to make money?
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bila jednako dobra kao i tehnologija
koju koristimo da zaradimo novac?
koju koristimo da zaradimo novac?
06:49
Detrol. In the side effects for his drug,
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Detrol. Među neželjenim efektima njegovih lekova,
06:51
integrated into that, the stem cell transplant that he had,
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integrisana u njih, je transplantacija matičnih ćelija koju je imao
06:53
the first in the world, shared openly for anyone who wants to see it.
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prvi u svetu, razmenjena otvoreno
za svakog ko želi da je vidi.
za svakog ko želi da je vidi.
06:59
I love here -- the cyberkinetics implant,
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Sviđa mi se ovo -- kibernetička proteza,
07:01
which was, again, the only patient's data that was online and available.
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što je, ponovo, bio jedini podatak o pacijentu,
onlajn i dostupan.
onlajn i dostupan.
07:05
You can adjust the time scale. You can adjust the symptoms.
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Možete podesiti vremensku skalu.
Možete podesiti simptome.
Možete podesiti simptome.
07:07
You can look at the interaction between how I treat my ALS.
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Možete da vidite interakciju između mojih lekova za ALS.
07:11
So, you click down on the ALS tab there.
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Mogu da pritisnem ovaj ALS tab.
07:13
I'm taking three drugs to manage it. Some of them are experimental.
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Uzimam tri leka da bih se lečio.
Neki od njih su eksperimentalni.
Neki od njih su eksperimentalni.
07:16
I can look at my constipation, how to manage it.
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Mogu da vidim moju opstipaciju i kako da je rešavam.
07:18
I can see magnesium citrate, and the side effects
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Mogu da vidim magenzijum citrat, neželjene efekte
07:20
from that drug all integrated in the time
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tog leka koji su integrisani u
07:22
in which they're meaningful.
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značajnom vremenu.
07:25
But I want more.
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Ali želim više.
07:27
I don't want to just look at this cool device, I want to take this
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Ne želim samo da gledam u ovaj sjajan izum, želim od ovog
07:29
data and make something even better.
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podatka da napravim nešto još bolje.
07:31
I want my brother's center of the universe and his symptoms
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Želim da centar sveta mog brata, njegove simptome
07:34
and his drugs,
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njegove lekove
07:37
and all of the things that interact among those,
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i sve te stvari koje deluju jedna na drugu,
07:39
the side effects, to be in this beautiful data galaxy
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neželjene efekte, stavim u ovo divno sazvežđe podataka,
07:42
that we can look at in any way we want to understand it,
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koje možemo da proučavamo na koji god želimo način
da bi ga razumeli,
da bi ga razumeli,
07:45
so that we can take this information
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tako da sa ovom informacijom možemo
07:48
and go beyond just this simple model
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da odemo dalje od ovog jednostavnog modela,
07:52
of what a record is.
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medicinskog kartona.
07:55
I don't even know what a medical record is.
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Čak i ne znam šta je medicinski karton.
07:57
I want to solve a problem. I want an application.
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Želim da rešim problem, želim aplikaciju.
07:59
So, can I take this data -- rearrange yourself,
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Dakle, mogu li ovi podaci -- nakon što se sortiraju,
08:02
put the symptoms in the left, the drugs across the top,
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simptomi stave levo, lekovi prekoputa na vrh,
08:04
tell me everything we know about Steven and everyone else,
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da mi kažu sve što znamo o Stivenu i svakom drugom
08:06
and what interacts.
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i šta je međusobno zavisno.
08:09
Years after he's had these drugs,
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Godinama nakon što je uzimao ove lekove,
08:11
I learned that everything he did to manage his excess saliva,
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naučio sam sve što je činio da bi se rešio
preterane salivacije,
preterane salivacije,
08:14
including some positive side effects that came from other drugs,
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uključujući korisne propratne efekte nekih drugih lekova,
08:17
were making his constipation worse.
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što je pogoršavalo opstipaciju.
08:19
And if anyone's ever had severe constipation,
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Ukoliko ste bilo kad imali tešku opstipaciju
08:21
and you don't understand how much of an impact that has on your life --
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onda razumete koliko to mnogo utiče na vaš život --
08:23
yes, that was a pun.
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da, to je bila igra reči.
08:26
You're trying to manage these,
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Pokušavate to da rešite,
08:28
and this grid is available here,
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a ovde je mreža
08:30
and we want to understand it.
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koju želimo da razumemo.
08:33
No one's ever had this kind of information.
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Niko do sad nije imao tu vrstu informacije.
08:36
So, patients have this. We're for patients.
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Pacijenti je sad imaju. Mi smo za pacijente.
08:38
This is all about patient health care, there was no doctors on our network.
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Sve ovo se tiče brige o pacijentu,
nije bilo lekara u našoj mreži.
nije bilo lekara u našoj mreži.
08:40
This is about the patients.
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Ovo se odnosi na pacijenate.
08:42
So, how can we take this and bring them a tool
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Kako možemo od ovoga da stvorimo sredstvo kojim
08:45
that they can go back and they can engage the medical system?
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oboleli mogu da se vrate i uključe u medicinski sistem?
08:47
And we worked hard, and we thought about it and we said,
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Naporno smo radili i razmišljali o tome i rekli:
08:50
"What's something we can use all the time,
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“Šta je to što možemo da koristimo sve vreme,
08:52
that we can use in the medical care system,
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što možemo da upotrebimo u sistemu zdravstvene zaštite,
08:54
that everyone will understand?"
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a svi će razumeti?”
08:56
So, the patients print it out,
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Pacijenti su to odštampali,
08:58
because hospitals usually block us
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zato što nas bolnice obično blokiraju
09:00
because they believe we are a social network.
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misleći da smo društvena mreža.
09:03
It's actually the most used feature on the website.
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To je u stvari najviše korišćena osobina ovog sajta.
09:05
Doctors actually love this sheet, and they're actually really engaged.
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Lekari zapravo vole ovu stranicu i veoma su uključeni.
09:08
So, we went from this story of Steven
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Počeli smo od ove priče o Stivenu,
09:11
and his history to data, and then back to paper,
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od njegove istorije do podataka, a zatim nazad na papir,
09:14
where we went back and engaged the medical care system.
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gde smo ponovo uključili zdravstveni sistem.
09:15
And here's another paper.
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Ovde je još jedan članak.
09:17
This is a journal, PNAS --
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Ovo je časopis, PNAS --
09:19
I think it's the Proceedings of the National Academy of Science
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mislim da je Zbornik nacionalne akademije nauka
09:21
of the United States of America.
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SAD-a.
09:23
You've seen multiple of these today, when everyone's bragging about
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Danas ste videli dosta ovakvih, gde se svako hvali
09:25
the amazing things they've done.
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neverovatnim stvarima koje su uradili.
09:27
This is a report about a drug called lithium.
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Ovo je izveštaj o leku koji se zove litijum.
09:29
Lithium, that is a drug used to treat bipolar disorder,
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Litijum se koristi za lečenje bipolarnog poremećaja,
09:33
that a group in Italy found
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a italijanski tim je pronašao,
09:35
slowed ALS down in 16 patients, and published it.
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u grupi od 16 pacijenata, da usporava ALS i to su objavili.
09:38
Now, we'll skip the critiques of the paper.
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Za sada ćemo zanemariti sve kritike ovog rada.
09:40
But the short story is: If you're a patient,
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Ali, ukratko: ako ste pacijent
09:42
you want to be on the blue line.
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želite da budete na plavoj liniji.
09:44
You don't want to be on the red line, you want to be on the blue line.
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Ne želite da budete na crvenoj liniji,
želite da budete na plavoj.
želite da budete na plavoj.
09:46
Because the blue line is a better line. The red line
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Zato što je plava linija bolja. Crvena je
09:48
is way downhill, the blue line is a good line.
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put naniže, plava linija je dobra linija.
09:50
So, you know we said -- we looked at this, and what I love also
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Znate, rekli smo -- mi smo ovo proučili, a takođe volim
09:54
is that people always accuse these Internet sites
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to što ljudi stalno optužuju ove Internet sajtove
09:56
of promoting bad medicine and having people do things irresponsibly.
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da podstiču loše lečenje i čine da ljudi
neodgovorno rade stvari.
neodgovorno rade stvari.
09:59
So, this is what happened when PNAS published this.
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Isto se dogodilo i kad je PNAS ovo objavio.
10:02
Ten percent of the people in our system took lithium.
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Deset posto ljudi u našem sistemu je počelo da uzima litijum.
10:05
Ten percent of the patients started taking lithium based on 16 patients of data
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Počeli su da uzimaju litijum na osnovu
podataka dobijenih na 16 pacijenata
podataka dobijenih na 16 pacijenata
10:08
in a bad publication.
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u lošem članku.
10:10
And they call the Internet irresponsible.
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I oni kažu da je Internet neodogovoran.
10:12
Here's the implication of what happens.
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Ovde je nagoveštaj onog što se desilo.
10:14
There's this one guy, named Humberto, from Brazil,
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Ovde je jedan momak, zove se Umberto, iz Brazila
10:17
who unfortunately passed away nine months ago,
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koji je, nažalost, preminuo pre devet meseci,
10:20
who said, "Hey, listen. Can you help us answer this question?
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koji je pitao: “Slušajte. Možete li nam pomoći da
odgovorimo na pitanje?
odgovorimo na pitanje?
10:22
Because I don't want to wait for the next trial, it's going to be years.
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Ne želim da čekam na sledeće ispitivanje, proći će godine.
10:25
I want to know now. Can you help us?"
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Želim da znam sada. Možete li da nam pomognete?”
10:27
So, we launched some tools, we let them track their blood levels.
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Tako smo izbacili neke alate,
dozvolili smo im da prate nivoe u krvi.
dozvolili smo im da prate nivoe u krvi.
10:30
We let them share the data and exchange it.
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Dozvolili smo im da razmenjuju i dele ove podatke.
10:32
You know, a data network.
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Znate, mreža podataka.
10:35
And they said, you know, "Jamie, PLM,
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Oni su tražili: “Džejmi, da li vi,
10:37
can you guys tell us whether this works or not?"
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momci iz PLM-a, možete da
nam kažete da li je efikasan ili ne?”
nam kažete da li je efikasan ili ne?”
10:39
And we went around and we talked to people,
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Raspitivali smo se, razgovarali sa ljudima
10:41
and they said, "You can't run a clinical trial like this. You know?
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i odgovorili su nam: “Ne možete
tako voditi kliničko ispitivanje. Znate?
tako voditi kliničko ispitivanje. Znate?
10:43
You don't have the blinding, you don't have data,
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Nemate slepu studiju, nemate podatke,
10:45
it doesn't follow the scientific method.
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ne pratite naučni metod.
10:47
It's never going to work. You can't do it."
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To tako nikad neće funkcionisati. Ne možete to da uradite.”
10:49
So, I said, "Okay well we can't do that. Then we can do something harder."
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Rekao sam: “OK, ne možemo to da uradimo.
Onda možemo nešto teže.”
Onda možemo nešto teže.”
10:52
(Laughter)
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(Smeh)
10:55
I can't say whether lithium works in all ALS patients,
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Ne mogu da kažem da li je litijum efikasan
kod svih obolelih od ALS-a,
kod svih obolelih od ALS-a,
10:57
but I can say whether it works in Humberto.
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ali mogu da kažem da li je efikasan za Umberta.
11:00
I bought a Mac about two years ago, I converted over,
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Kupio sam Mac pre oko dve godine, preobratio sam se,
11:02
and I was so excited about this new feature of the time machine
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bio sam veoma zainteresovan za
ovu novu osobinu vremenskog alata
ovu novu osobinu vremenskog alata
11:04
that came in Leopard. And we said -- because it's really cool,
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koja je došla sa Leopardom. Rekli smo --
jer je veoma dobra,
jer je veoma dobra,
11:06
you can go back and you can look at the entire history of your computer,
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možete da odete u prošlost, pregledate
svu istoriju vašeg kompjutera
svu istoriju vašeg kompjutera
11:08
and find everything you've lost, and I loved it.
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i pronađete sve što ste izgubili, to sam obožavao.
11:10
And I said, "What if we built a time machine for patients,
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Rekao sam: “Šta ako napravimo vremenski alat za pacijente,
11:14
except instead of going backwards, we go forwards.
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ali umesto da idemo u prošlost, idemo u budućnost.
11:17
Can we find out what's going to happen to you,
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Možemo li da otkrijemo šta će se tebi dogoditi,
11:20
so that you can maybe change it?"
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tako da bi to možda mogao da promeniš?”
11:23
So, we did. We took all the patients like Humberto,
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To smo i uradili. Uzeli smo sve pacijente
koji su kao Umberto,
koji su kao Umberto,
11:26
That's the Apple background, we stole that because we didn't have time
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to je Apple-ova pozadina,
ukrali smo je jer nismo imali vremena
ukrali smo je jer nismo imali vremena
11:28
to build our own. This is a real app by the way.
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da napravimo našu. Uzgred rečeno,
ovo je stvarna aplikacija.
ovo je stvarna aplikacija.
11:30
This is not just graphics.
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Ovo nije samo grafika.
11:32
And you take those data, and we find the patients like him, and we bring
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Uzmete te podatke, pronađete pacijente kao on i sakupite
11:34
their data together. And we bring their histories into it.
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njihove podatke. Donesemo njihove istorije u to.
11:38
And then we say, "Well how do we line them all up?"
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Zatim kažemo: “Dobro, kako da ih obradimo?”
11:40
So, we line them all up so they go together
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Sve smo ih grupisali tako da su usaglašeni
11:42
around the meaningful points,
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oko značajnih tačaka,
11:44
integrated across everything we know about the patient.
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integrisani kroz sve podatke koje znamo o pacijentu.
11:46
Full information, the entire course of their disease.
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Potpuna informacija, kao što je celokupni tok njihove bolesti.
11:50
And that's what is going to happen to Humberto,
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To će se dogoditi Umbertu
11:52
unless he does something.
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ukoliko ništa ne preduzme.
11:54
And he took lithium, and he went down the line.
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Uzeo je litijum i nastavio da se pogoršava.
11:57
And it works almost every time.
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Ovo važi skoro za svakog pacijenta.
12:00
Now, the ones that it doesn't work are interesting.
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Sada, interesantni su oboleli koji su izuzetak.
12:02
But almost all the time it works.
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Ali skoro uvek može da se primeni.
12:05
It's actually scary. It's beautiful.
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To je zapravo zastrašujuće. To je divno.
12:07
So, we couldn't run a clinical trial, we couldn't figure it out.
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Dakle, nismo mogli da radimo
kliničko ispitivanje niti da ga protumačimo.
kliničko ispitivanje niti da ga protumačimo.
12:09
But we could see whether it was going to work for Humberto.
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Ali mogli smo da vidimo da li će biti efkasno za Umberta.
12:12
And yeah, all the clinicians in the audience will talk about power
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Svi kliničari u publici će govoriti o snazi ispitvanja
12:14
and all the standard deviation. We'll do that later.
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i o standardnim devijacijama. O tome ćemo posle.
12:16
But here is the answer
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Ali tu je odgovor u obliku
12:20
of the mean of the patients that actually decided
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proseka pacijenata koji su zaista odlučili
12:22
to take lithium.
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da uzmu litijum.
12:24
These are all the patients that started lithium.
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Ovo su svi pacijenti koji su počeli da uzimaju litijum.
12:26
It's the Intent to Treat Curve.
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To je kriva namere za lečenje.
12:28
You can see here, the blue dots on the top, the light ones,
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Ovde možete videti, ove svetle plave tačke na vrhu,
12:32
those are the people in the study in PNAS
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to su ljudi u studiji u PNAS-a,
12:34
that you wanted to be on. And the red ones are the ones,
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u toj grupi tačaka želite da budete. A crvene,
12:36
the pink ones on the bottom are the ones you didn't want to be.
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ružičaste ovde na dnu, su one gde ne želite da budete.
12:38
And the ones in the middle are all of our patients
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A ove u sredini su svi naši pacijenti
12:41
from the start of lithium at time zero,
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koji su počeli sa litijumom u nultom vremenu,
12:43
going forward, and then going backward.
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idući unapred, a zatim unazad.
12:47
So, you can see we matched them perfectly, perfectly.
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Vidite da smo ih savršeno usaglasili, savršeno.
12:50
Terrifyingly accurate matching.
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Zastrašujući savršeno usaglašavanje.
12:52
And going forward, you actually don't want to be a lithium patient this time.
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Gledajući unapred,
ovaj put stvarno ne želite da uzimate litijum.
ovaj put stvarno ne želite da uzimate litijum.
12:56
You're actually doing slightly worse -- not significantly,
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Zaista vam je nešto lošije -- ne značajno,
12:58
but slightly worse. You don't want to be a lithium patient this time.
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ali malo lošije. Ovaj put ne želite da uzimate litijum.
13:01
But you know, a lot of people dropped out,
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Ali znate, dosta ljudi je odustalo,
13:04
the trial, there is too much drop out.
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mislim od ispitivanja, previše je odustalo.
13:06
Can we do the even harder thing? Can we go to the patients
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Možemo li da uradimo nešto još teže? Da nađemo pacijente
13:08
that actually decided to stay on lithium,
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koji su stvarno odlučili da ostanu na litijumu
13:12
because they were so convinced they were getting better?
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jer su bili veoma uvereni da će im biti bolje?
13:14
We asked our control algorithm,
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Pitali smo naš kontrolni algoritam
13:16
are those 69 patients -- by the way, you'll notice
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za tih 69 pacijenata -- uzgred, primetićete
13:18
that's four times the number of patients in the clinical trial --
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da je to četiri puta više pacijenata nego u kliničkoj studiji --
13:21
can we look at those patients and say,
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možemo li da gledamo u te pacijente i da odgovorimo:
13:24
"Can we match them with our time machine
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“Možemo li našim vremenskim alatom da ih uporedimo
13:27
to the other patients that are just like them,
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sa drugim, njima sličnim, pacijentima
13:29
and what happens?"
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i šta se tada događa?”
13:31
Even the ones that believed they were getting better
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Čak i oni koji su verovali da se oporavljaju
13:34
matched the controls exactly. Exactly.
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su tačno usaglašeni sa kontrolama. U potpunosti.
13:37
Those little lines? That's the power.
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Ove male linije? To je snaga.
13:39
So, we -- I can't tell you lithium doesn't work. I can't tell you
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Mogu da vam kažem da litijum ne deluje.
Mogu da vam kažem
Mogu da vam kažem
13:41
that if you did it at a higher dose
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da ako ga uzimate u većim dozama
13:43
or if you run the study proper -- I can tell you
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ili ako radite potpunu studiju -- mogu da vam kažem
13:45
that for those 69 people that took lithium,
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da tih 69 pacijenata koji su uzimali litijum
13:49
they didn't do any better than the people that were just like them,
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nisu bili ništa bolje nego njima slični pacijenti,
13:51
just like me,
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meni slični pacijenti,
13:53
and that we had the power to detect that at about
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a imali smo moć da ovo otkrijemo u
13:56
a quarter of the strengths reported in the initial study.
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četvrtini jačina saopštenih u inicijalnoj studiji.
13:59
We did that one year ahead of the time
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To smo uradili godinu dana pre
14:02
when the first clinical trial funded by the NIH
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nego što je prvo kliničko ispitivanje,
Nacionalni institut za zdravlje ga je finansirao
Nacionalni institut za zdravlje ga je finansirao
14:04
for millions of dollars failed for futility last week,
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milionima dolara, prošle nedelje proglašeno
14:07
and announced it.
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neuspešnim zbog uzaludnosti.
14:10
So, remember I told you about my brother's stem cell transplant.
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Setite se, govorio sam vam o
transplantaciji matičnih ćelija mog brata.
transplantaciji matičnih ćelija mog brata.
14:13
I never really knew whether it worked.
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Nikad nisam saznao da li je to delovalo.
14:16
And I put 100 million cells in his cisterna magna,
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Stavio sam 100 miliona ćelija u veliku cisternu
14:19
in his lumbar cord,
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njegove kičmene moždine,
14:21
and filled out the IRBs and did all this work,
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popunio sve te formulare i sve to uradio,
14:23
and I never really knew.
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a da nikad nisam saznao istinu.
14:26
How did I not know?
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Kako sam mogao da ne znam?
14:28
I mean, I didn't know what was going to happen to him.
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Mislim, nisam znao šta će se njemu desiti,
14:30
I actually asked Tim, who is the quant in our group --
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pitao sam Tima koji je matematičar u našoj grupi --
14:33
we actually searched for about a year to find someone
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oko godinu dana smo tražili nekoga
14:36
who could do the sort of math and statistics and modeling
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ko bi mogao da uradi tu vrstu matematike,
statistike i modeliranja
statistike i modeliranja
14:38
in healthcare, couldn't find anybody. So, we went to the finance industry.
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u zdravstvu, nismo nikog mogli da nađemo.
Prešli smo na finansijski sistem.
Prešli smo na finansijski sistem.
14:41
And there are these guys who used to model the future
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Tamo su bili ovi momci koji su modelirali kretanje
14:43
of interest rates, and all that kind of stuff.
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kamatnih stopa i tome slično.
14:45
And some of them were available. So, we hired one.
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Neki od njih su bili slobodni. Jednog smo angažovali.
14:48
(Laughter)
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(Smeh)
14:51
We hired them, set them up, assisting at lab.
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Angaživali smo ih, postavili ih kao laboratorijske asistente.
14:53
I I.M. him things. That's the way I communicate with him,
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Slao sam mu instant poruke.
To je način komunikacije sa njim,
To je način komunikacije sa njim,
14:55
is like a little guy in a box. I I.M.ed Tim. I said,
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kao mali dečak u kutiji. Rekao sam:
14:57
"Tim can you tell me whether my brother's stem cell transplant
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“Time, možeš li da mi ogovoriš
da li je transplantacija matičnih ćelija
da li je transplantacija matičnih ćelija
14:59
worked or not?"
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kod mog brata bila uspešna ili ne?”
15:02
And he sent me this two days ago.
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Ovo mi je poslao pre dva dana.
15:05
It was that little outliers there. You see that guy that lived a long time?
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To su bila ova mala odstupanja.
Vidite ovog čoveka koji je dugo živeo?
Vidite ovog čoveka koji je dugo živeo?
15:08
We have to go talk to him. Because I'd like to know what happened.
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Moramo da razgovaramo sa njim.
Jer bih želeo da znam šta se dogodilo.
Jer bih želeo da znam šta se dogodilo.
15:10
Because something went different.
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Nešto je bilo drugačije.
15:12
But my brother didn't. My brother went straight down the line.
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Moj brat nije dugo živeo. Išao je pravo naniže.
15:15
It only works about 12 months.
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Predviđanje važi samo oko 12 meseci.
15:17
It's the first version of the time machine.
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Ovo je prva verzija vremenskog alata.
15:19
First time we ever tried it. We'll try to get it better later
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Prvi put da smo je uopšte testirali.
Pokušaćemo kasnije da je poboljšamo,
Pokušaćemo kasnije da je poboljšamo,
15:21
but 12 months so far.
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ali za sada je pouzdana 12 meseci.
15:24
And, you know, I look at this,
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Znate, kad gledam ovo
15:28
and I get really emotional.
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zaista postajem veoma ganut.
15:30
You look at the patients, you can drill in all the controls,
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Procenjujete pacijente,
možete iznova da proučavate sve kontrole,
možete iznova da proučavate sve kontrole,
15:32
you can look at them, you can ask them.
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možete da ih posmatrate, da ih pitate.
15:34
And I found a woman that had --
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Našao sam ženu koja je imala --
15:37
we found her, she was odd because she had data
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našli smo je, a bila je neobična jer je imala podatke
15:39
after she died.
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nakon smrti.
15:41
And her husband had come in and entered her last functional scores,
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Njen suprug se ulogovao i uneo njene
poslednje funkcionalne bodove,
poslednje funkcionalne bodove,
15:44
because he knew how much she cared.
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jer je znao koliko joj je stalo.
15:47
And I am thankful.
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Zahvalan sam na tome.
15:50
I can't believe that these people,
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Ne mogu da verujem da su mi ovi ljudi,
15:52
years after my brother had died,
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godinama nakon što je moj brat umro,
15:54
helped me answer the question about whether
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pomogli da odgovorim na pitanje o tome
15:56
an operation I did, and spent millions of dollars on
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da li je operacija koju je imao,
na koju sam godinama ranije
na koju sam godinama ranije
15:59
years ago, worked or not.
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potrošio milione dolara, bila efikasna ili ne.
16:01
I wished it had been there
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Voleo bih da je ovo postojalo
16:03
when I'd done it the first time,
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kad je urađena prvi put
16:05
and I'm really excited that it's here now,
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i zaista sam uzbuđen što je to sada ovde,
16:07
because the lab that I founded
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jer laboratorija koju sam osnovao
16:12
has some data on a drug that might work,
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ima neke podatke o leku koji bi mogao da deluje,
16:14
and I'd like to show it.
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što bih hteo da izložim.
16:18
I'd like to show it in real time, now,
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Voleo bih da ga prikažem u stvarnom vremenu, sada,
16:20
and I want to do that for all of the diseases that we can do that for.
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želim isto da uradim i za druge bolesti kod kojih je moguće.
16:25
I've got to thank the 45,000 people
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Moram da se zahvalim ovim ljudima, njih 45 000
16:28
that are doing this social experiment with us.
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koji sa nama učestvuju u socijalnom eksperimentu.
16:31
There is an amazing journey we are going on
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To je neverovatno putovanje na koje smo krenuli
16:34
to become human again,
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da bi ponovo bili ljudi,
16:36
to be part of community again,
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da bi ponovo bili deo zajednice,
16:39
to share of ourselves, to be vulnerable,
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da bi dali deo sebe, da budemo ranjivi
16:41
and it's very exciting. So, thank you.
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a to je veoma uzbudljivo. Hvala.
16:44
(Applause)
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(Aplauz)
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