John Wilbanks: Let's pool our medical data

31,369 views ・ 2012-10-16

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00:00
Translator: Joseph Geni Reviewer: Morton Bast
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譯者: Meilun Shih 審譯者: Yingxue Sun
00:15
So I have bad news, I have good news,
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今天我有好消息和壞消息,
00:18
and I have a task.
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我還有個任務。
00:20
So the bad news is that we all get sick.
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壞消息是我們都會生病。
00:23
I get sick. You get sick.
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我會生病。你會生病。
00:25
And every one of us gets sick, and the question really is,
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當有人生病時,真正的問題在於,
00:28
how sick do we get? Is it something that kills us?
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我們病的多嚴重?有可能致命嗎?
00:30
Is it something that we survive?
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還是我們可以倖存?
00:32
Is it something that we can treat?
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我們可以被醫治嗎?
00:34
And we've gotten sick as long as we've been people.
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只要我們是人類,就會生病。
00:37
And so we've always looked for reasons to explain why we get sick.
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於是我們總是在找為什麼會生病的原因。
00:40
And for a long time, it was the gods, right?
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好一段時間以來,都是因為眾神,對吧?
00:42
The gods are angry with me, or the gods are testing me,
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眾神對我感到惱怒,或者是眾神在測試我,對嗎?
00:46
right? Or God, singular, more recently,
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又或者是到較近期,唯一的,上帝,
00:48
is punishing me or judging me.
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在懲罰我或審判我。
00:51
And as long as we've looked for explanations,
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只要我們一开始尋找解釋,
00:53
we've wound up with something that gets closer and closer to science,
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就會愈來越接近科學,
00:57
which is hypotheses as to why we get sick,
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找到我們為什麼會生病的假設原因,
01:00
and as long as we've had hypotheses about why we get sick, we've tried to treat it as well.
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只要我們有了為什麼會生病的假設原因,就會試圖治療。
01:04
So this is Avicenna. He wrote a book over a thousand years ago called "The Canon of Medicine,"
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這位是 Avicenna。一千多年前他寫了一本書 叫《醫典》("The Canon of Medicine"),
01:08
and the rules he laid out for testing medicines
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列出了測試藥物的規則,
01:11
are actually really similar to the rules we have today,
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其實非常類似我們今日的規則,
01:12
that the disease and the medicine must be the same strength,
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像是疾病和藥物具有同等強度、
01:15
the medicine needs to be pure, and in the end we need
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藥物必須質純、最後必須進行人體測試。
01:18
to test it in people. And so if you put together these themes
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若能將這些理想的假設狀況
01:21
of a narrative or a hypothesis in human testing,
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全部集合到人體試驗上,
01:25
right, you get some beautiful results,
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你會得到絕佳結果,
01:28
even when we didn't have very good technologies.
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就算當下並沒有非常先進的技術。
01:30
This is a guy named Carlos Finlay. He had a hypothesis
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有個名叫 Carlos Finlay 的男人,提出了一個假設,
01:33
that was way outside the box for his time, in the late 1800s.
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對他所處的 19 世紀末來說,是相當先進的。
01:35
He thought yellow fever was not transmitted by dirty clothing.
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他認為黃熱病不是藉由髒衣物傳染。
01:38
He thought it was transmitted by mosquitos.
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他認為是透過蚊子傳染。
01:41
And they laughed at him. For 20 years, they called this guy
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眾人都取笑他。20 年來,人們稱他為
01:43
"the mosquito man." But he ran an experiment in people,
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「蚊子男」。但他進行了人體試驗,
01:47
right? He had this hypothesis, and he tested it in people.
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對吧?他提出一個假設,並對它進行人體測試。
01:50
So he got volunteers to go move to Cuba and live in tents
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所以他找了一些自願者搬到古巴,住在帳篷裡,
01:54
and be voluntarily infected with yellow fever.
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自願感染黃熱病。
01:57
So some of the people in some of the tents had dirty clothes
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其中一些人的帳篷裡有髒衣服、
02:00
and some of the people were in tents that were full
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而其他一些人的帳篷裡充滿著
02:02
of mosquitos that had been exposed to yellow fever.
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帶有黃熱病的蚊子。
02:04
And it definitively proved that it wasn't this magic dust
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結果無疑地證明了,不是你衣物中
02:07
called fomites in your clothes that caused yellow fever.
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被稱做汙染物的神秘灰塵,引發了黃熱病的傳染。
02:11
But it wasn't until we tested it in people that we actually knew.
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但直到進行了人體試驗 我們才真正確認這件事。
02:14
And this is what those people signed up for.
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這是那些人自願做的事。
02:16
This is what it looked like to have yellow fever in Cuba
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這是當時在古巴罹患黃熱病的樣子。
02:19
at that time. You suffered in a tent, in the heat, alone,
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在帳篷中受苦,發高燒,孤單一人,
02:24
and you probably died.
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而且有可能會死。
02:26
But people volunteered for this.
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但這些人對此自告奮勇。
02:30
And it's not just a cool example of a scientific design
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這並不僅是件根據理論操作的
02:33
of experiment in theory. They also did this beautiful thing.
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科學設計實驗範例, 他們還做了一件了不起的事。
02:36
They signed this document, and it's called an informed consent document.
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他們簽署了這個文件,叫做《受試者同意書》。
02:40
And informed consent is an idea that we should be
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受試者同意書是我們社會應該
02:42
very proud of as a society, right? It's something that
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感到自豪的概念,對不對?這是能將我們和
02:44
separates us from the Nazis at Nuremberg,
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在紐倫堡實行強制醫療實驗的納粹主義
02:47
enforced medical experimentation. It's the idea
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區隔開來的東西。這想法是
02:50
that agreement to join a study without understanding isn't agreement.
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同意參與研究,卻不瞭解研究內容的話,此協定就不成立。
02:54
It's something that protects us from harm, from hucksters,
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這可保護我們不受到傷害、不遭商人欺騙、
02:58
from people that would try to hoodwink us into a clinical
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或任何人哄騙而進行一件
03:01
study that we don't understand, or that we don't agree to.
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我們不了解或不同意的臨床研究。
03:05
And so you put together the thread of narrative hypothesis,
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因此,如果你將各種假設條件集合起來,
03:09
experimentation in humans, and informed consent,
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進行人體實驗、簽署受試者同意書,
03:12
and you get what we call clinical study, and it's how we do
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你就達到我們所說的臨床研究標準,這也是我們
03:14
the vast majority of medical work. It doesn't really matter
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我們進行大量醫療研究的方式。
03:17
if you're in the north, the south, the east, the west.
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不管你人在哪裡都無關。
03:20
Clinical studies form the basis of how we investigate,
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臨床研究構成我們研究的基礎,
03:24
so if we're going to look at a new drug, right,
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如果我們要看一種新藥物的效果,
03:26
we test it in people, we draw blood, we do experiments,
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我們進行人體測試、抽血、進行實驗、
03:29
and we gain consent for that study, to make sure
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取得此研究的受試者同意書,以確保
03:31
that we're not screwing people over as part of it.
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過程中我們不會傷害任何人。
03:34
But the world is changing around the clinical study,
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但是臨床研究的领域有了很大改變,
03:37
which has been fairly well established for tens of years
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就算它在過去數十年來,就算不到五十或者一百年,
03:41
if not 50 to 100 years.
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已經建立了完善的架構。
03:42
So now we're able to gather data about our genomes,
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我們現在可以蒐集基因組的資料,
03:45
but, as we saw earlier, our genomes aren't dispositive.
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但是,如同我們剛才所見,我們的基因組是固定的。
03:48
We're able to gather information about our environment.
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我們可蒐集周遭環境的資訊。
03:51
And more importantly, we're able to gather information
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更重要地,我們可以蒐集
03:53
about our choices, because it turns out that what we think of
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我們選擇的資訊,因為事實上
03:56
as our health is more like the interaction of our bodies,
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我們的健康更像是我們的身體、基因組、
03:59
our genomes, our choices and our environment.
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我們的選擇、和環境間互動而來的結果。
04:02
And the clinical methods that we've got aren't very good
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我們現有的臨床方法不是很適合研究,
04:05
at studying that because they are based on the idea
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因為它們是以人和人的互動
04:08
of person-to-person interaction. You interact
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作為基礎。你和你的
04:10
with your doctor and you get enrolled in the study.
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醫生互動、然後被登記到研究中。
04:12
So this is my grandfather. I actually never met him,
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這是我的外公,事實上我從未見過他,
04:14
but he's holding my mom, and his genes are in me, right?
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但他抱著我媽,而且我身上流著他的基因,對吧?
04:18
His choices ran through to me. He was a smoker,
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他的選擇流到我身上來。他吸菸,
04:21
like most people were. This is my son.
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跟很多人一樣。這是我的兒子。
04:23
So my grandfather's genes go all the way through to him,
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所以我外公的基因流到他身上去,
04:27
and my choices are going to affect his health.
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而我的選擇也將影響他的健康。
04:29
The technology between these two pictures
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這兩張照片所使用的科技
04:32
cannot be more different, but the methodology
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相差甚大。但是在這段期間,
04:36
for clinical studies has not radically changed over that time period.
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臨床研究的方法並沒有什麼劇烈改變。
04:40
We just have better statistics.
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我們只是有較好的統計資料。
04:43
The way we gain informed consent was formed in large part
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我們取得受試者同意書的方法 大致是在二次世界大戰後形成,
04:46
after World War II, around the time that picture was taken.
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大約是那照片拍攝的時間。
04:49
That was 70 years ago, and the way we gain informed consent,
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那是 70 年前,而我們取得受試者同意書的方法,
04:53
this tool that was created to protect us from harm,
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這個保護我們不受到傷害的同意書,
04:56
now creates silos. So the data that we collect
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現在變成了資料貯存窖。我們為前列腺癌
04:59
for prostate cancer or for Alzheimer's trials
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或阿茲海默症試驗所蒐集來的資料,
05:02
goes into silos where it can only be used
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被存放到只被用來研究
05:05
for prostate cancer or for Alzheimer's research.
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前列腺癌症或阿茲海默症的資料貯存窖中。
05:08
Right? It can't be networked. It can't be integrated.
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對吧?資料不能被分享。不能被連結。
05:11
It cannot be used by people who aren't credentialed.
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不能被無憑證的人使用。
05:14
So a physicist can't get access to it without filing paperwork.
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所以沒有申請許可的話,物理學家不能取得資訊。
05:17
A computer scientist can't get access to it without filing paperwork.
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沒有申請許可的話,電腦科學家不能取得資訊。
05:20
Computer scientists aren't patient. They don't file paperwork.
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電腦科學家很沒耐心,他們不申請許可的。
05:24
And this is an accident. These are tools that we created
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這真是個意外。我們創造了這些工具
05:28
to protect us from harm, but what they're doing
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來保護我們不受到傷害,但它們現在卻
05:32
is protecting us from innovation now.
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阻礙我們創新。
05:34
And that wasn't the goal. It wasn't the point. Right?
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這有違目的。因為那不是本來的意思。對吧?
05:37
It's a side effect, if you will, of a power we created
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你可以想說,這是我們立意為善下
05:40
to take us for good.
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所產生的副作用。
05:42
And so if you think about it, the depressing thing is that
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當你這麼想時,令人沮喪的是
05:46
Facebook would never make a change to something
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臉書永遠不會為了第三階段臨床試驗裡
05:48
as important as an advertising algorithm
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這麼小的樣品數,來改變其廣告規則
05:50
with a sample size as small as a Phase III clinical trial.
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這樣重要的事。
05:55
We cannot take the information from past trials
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我們不能使用過去試驗的資訊
05:58
and put them together to form statistically significant samples.
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建立具有顯著統計性的研究樣品數。
06:03
And that sucks, right? So 45 percent of men develop
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這感覺超差的,對不對?於是 45% 的男人會罹患癌症。
06:06
cancer. Thirty-eight percent of women develop cancer.
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38% 的女人會罹患癌症。
06:09
One in four men dies of cancer.
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四分之一的男人會因癌症而死。
06:11
One in five women dies of cancer, at least in the United States.
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五分之一的女人會因癌症而死,至少就美國而言。
06:15
And three out of the four drugs we give you
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在癌症試驗中,我們給你的四顆藥中,
06:17
if you get cancer fail. And this is personal to me.
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有三顆是無效的。我對這些都身有所感。
06:21
My sister is a cancer survivor.
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我妹妹是癌症的倖存者。
06:23
My mother-in-law is a cancer survivor. Cancer sucks.
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我的岳母是癌症的倖存者。癌症爛透了。
06:26
And when you have it, you don't have a lot of privacy
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當你罹患癌症時,你在醫院沒有什麼隱私權可言。
06:28
in the hospital. You're naked the vast majority of the time.
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大部分時間你赤身露體的。
06:32
People you don't know come in and look at you and poke you and prod you,
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不認識的人會進來、看一下你、戳你、刺你,
06:36
and when I tell cancer survivors that this tool we created
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當我告訴癌症倖存者,我們設計來
06:39
to protect them is actually preventing their data from being used,
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保護他們的工具,實際上是避免他們的個資被使用,
06:42
especially when only three to four percent of people
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尤其是在只有百分之三或四的癌症患者
06:44
who have cancer ever even sign up for a clinical study,
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曾經參與過臨床研究的情況下,
06:47
their reaction is not, "Thank you, God, for protecting my privacy."
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他們的反應不是,「天啊,謝謝你保護我的隱私。」
06:51
It's outrage
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而是憤怒,
06:53
that we have this information and we can't use it.
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我們有這些資訊,但我們不能使用它。
06:55
And it's an accident.
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這真是令人意外。
06:58
So the cost in blood and treasure of this is enormous.
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人們在這方面付出的生命和財產代價非常龐大。
07:01
Two hundred and twenty-six billion a year is spent on cancer in the United States.
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在美國,每年花費 2260 億在癌症上。
07:05
Fifteen hundred people a day die in the United States.
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在美國,每天有 1500 人死於癌症。
07:08
And it's getting worse.
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而且每況愈下。
07:10
So the good news is that some things have changed,
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所以好消息是,有些事已經改變,
07:13
and the most important thing that's changed
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而最重要的改變是
07:15
is that we can now measure ourselves in ways
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現在我們可以自我測量
07:17
that used to be the dominion of the health system.
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用以前由醫療系統掌控的方式。
07:20
So a lot of people talk about it as digital exhaust.
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很多人將此視為數位侵略。
07:22
I like to think of it as the dust that runs along behind my kid.
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我則樂於視為跟在我孩子後面的塵埃。
07:26
We can reach back and grab that dust,
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我們可以向後伸出手抓住一把,
07:28
and we can learn a lot about health from it, so if our choices
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然後從中學習到很多健康訊息, 所以如果我們的選擇
07:30
are part of our health, what we eat is a really important
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會影響到我們的健康, 我們所吃的食物就真的
07:33
aspect of our health. So you can do something very simple
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是我們健康的重要一環。 你可以做一些非常簡單
07:36
and basic and take a picture of your food,
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和基本的事情,像是 拍一張你吃的食物的照片,
07:38
and if enough people do that, we can learn a lot about
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若有足夠的人這麼做, 我們就可以學習到很多有關
07:41
how our food affects our health.
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食物如何影響我們健康的事情。
07:42
One interesting thing that came out of this — this is an app for iPhones called The Eatery —
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從中可得出一件有趣的事 ─ 這是一個 iPhone 應用程式叫 The Eatery ─
07:46
is that we think our pizza is significantly healthier
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我們都以為我們吃的披薩會比其他人的
07:49
than other people's pizza is. Okay? (Laughter)
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更為健康。對嗎?(笑聲)
07:52
And it seems like a trivial result, but this is the sort of research
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這看起來像是個極微小的結果,但是以前醫療系統
07:56
that used to take the health system years
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得花上好幾年和好幾十萬元
07:58
and hundreds of thousands of dollars to accomplish.
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才能完成的研究。
08:01
It was done in five months by a startup company of a couple of people.
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這是由一家兩個人成立的新創公司在五個月內完成的。
08:04
I don't have any financial interest in it.
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我對其中的財務狀況沒有興趣。
08:07
But more nontrivially, we can get our genotypes done,
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更重要的是,我們的基因型完成了,
08:10
and although our genotypes aren't dispositive, they give us clues.
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雖然我們的基因型不是不可處置的,它們給了我們線索。
08:12
So I could show you mine. It's just A's, T's, C's and G's.
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所以我可以給你們看我的。只有一些 A,T,C 和 G。
08:15
This is the interpretation of it. As you can see,
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這是翻譯。你可以看到,
08:18
I carry a 32 percent risk of prostate cancer,
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我有 32% 的機率罹患前列腺癌。
08:20
22 percent risk of psoriasis and a 14 percent risk of Alzheimer's disease.
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我有 22% 的機率罹患牛皮癬 和 14% 的機率罹患阿茲海默症。
08:24
So that means, if you're a geneticist, you're freaking out,
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這代表的是,如果你是個基因學家,你會被嚇死,
08:27
going, "Oh my God, you told everyone you carry the ApoE E4 allele. What's wrong with you?"
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「天阿,你告訴每個人你有 載脂蛋白E類等位基因。你是有什麼毛病啊?」
08:31
Right? When I got these results, I started talking to doctors,
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是吧?當我拿到結果時,我開始詢問醫生,
08:35
and they told me not to tell anyone, and my reaction is,
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他們告訴我不要告訴任何人,我的反應是,
08:37
"Is that going to help anyone cure me when I get the disease?"
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「當我生病時,這有助於其他人治療我嗎?」
08:40
And no one could tell me yes.
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沒有人可以跟我說對。
08:43
And I live in a web world where, when you share things,
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而我住在一個網路的世界,當你分享事情時,
08:46
beautiful stuff happens, not bad stuff.
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美妙的事情發生了,不是壞事。
08:49
So I started putting this in my slide decks,
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所以我開始將這放入我的投影片檔中,
08:51
and I got even more obnoxious, and I went to my doctor,
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而且我變得更令人討厭,我去找我的醫生,
08:53
and I said, "I'd like to actually get my bloodwork.
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我說:「我想要確實拿到我的血液檢查結果,
08:55
Please give me back my data." So this is my most recent bloodwork.
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請還給我我的資料。」 於是這是我最近的血液檢查報告。
08:58
As you can see, I have high cholesterol.
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你可以告到,我有高膽固醇。
09:00
I have particularly high bad cholesterol, and I have some
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我有特別高且不好的膽固醇,我有一些
09:03
bad liver numbers, but those are because we had a dinner party with a lot of good wine
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不好的肝臟指數,但這些是 一位我們進行檢查的前一天晚上
09:06
the night before we ran the test. (Laughter)
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參加了晚宴且喝了很多好酒。(笑聲)
09:09
Right. But look at how non-computable this information is.
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好。再看看這個資訊是多麼難計算。
09:13
This is like the photograph of my granddad holding my mom
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這就像是我祖父抱著我媽的那張照片的
09:16
from a data perspective, and I had to go into the system
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數據呈現,所以我必須進入系統
09:20
and get it out.
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將它找出來。
09:22
So the thing that I'm proposing we do here
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於是我要在這建議我們做的事是
09:25
is that we reach behind us and we grab the dust,
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我們向後方伸出手抓住塵埃
09:28
that we reach into our bodies and we grab the genotype,
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我們進入我們的身體內找到基因型,
09:31
and we reach into the medical system and we grab our records,
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我們進入醫療系統內找到我們的紀錄,
09:33
and we use it to build something together, which is a commons.
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我們一起將這些資料用來組合成一個公有物。
09:37
And there's been a lot of talk about commonses, right,
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已經有很多有關公有物的談論,
09:40
here, there, everywhere, right. A commons is nothing more
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這裡,那裡,到處都是。公有物就是
09:43
than a public good that we build out of private goods.
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我們用私人物打造出來的公有物。
09:46
We do it voluntarily, and we do it through standardized
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我們自願做這件事, 而且透過標準化的合法工具。
09:49
legal tools. We do it through standardized technologies.
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透過標準化的科技。
09:51
Right. That's all a commons is. It's something that we build
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是的。這就是一個公有物。 是我們一起建立的東西,
09:55
together because we think it's important.
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因為我們認為它很重要。
09:57
And a commons of data is something that's really unique,
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而且一個公有物的資料非常特別,
10:00
because we make it from our own data. And although
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因為我們用我們自己的資料來建立它。
10:03
a lot of people like privacy as their methodology of control
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雖然很多人喜歡將保護隱私 視為他們控制資料的方法,
10:05
around data, and obsess around privacy, at least
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且非常著迷於隱私,至少
10:07
some of us really like to share as a form of control,
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我們當中有些人真的喜歡 將分享視作一種控制的形式,
10:10
and what's remarkable about digital commonses
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而數位化公有物最值得注意的就是
10:13
is you don't need a big percentage if your sample size is big enough
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如果你的樣品數夠大, 你不需要大數值的比率
10:16
to generate something massive and beautiful.
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就可以產生大量且美好的結果。
10:19
So not that many programmers write free software,
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於是即使沒有很多程式設計師寫免費軟體,
10:21
but we have the Apache web server.
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但我們有阿帕契 (Apache) 網頁伺服器。
10:24
Not that many people who read Wikipedia edit,
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即使沒有很多讀維基百科的人進行編輯,
10:26
but it works. So as long as some people like to share
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但它仍在運作。所以只要有一些人喜歡將分享
10:30
as their form of control, we can build a commons, as long as we can get the information out.
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視作他們控制的形式,我們可以 建造一個公有物,只要我們可以取得資訊。
10:34
And in biology, the numbers are even better.
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而在生物學中,數量代表得更好。
10:36
So Vanderbilt ran a study asking people, we'd like to take
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於是 Vanderbilt 進行一項研究,問人們說,我們想要
10:39
your biosamples, your blood, and share them in a biobank,
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取你的生物樣品,你的血液,在生物銀行中進行分享,
10:42
and only five percent of the people opted out.
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只有百分之五的人們選擇不要。
10:45
I'm from Tennessee. It's not the most science-positive state
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我來自田納西州。並不是在美國最嚮往
10:48
in the United States of America. (Laughter)
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科學的一州。(笑聲)
10:51
But only five percent of the people wanted out.
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但只有百分之五的人選擇不要參加。
10:53
So people like to share, if you give them the opportunity and the choice.
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所以如果你給人們機會和選擇的話,他們喜歡分享。
10:57
And the reason that I got obsessed with this, besides the obvious family aspects,
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我會如此著迷的原因是, 除了明顯的家庭因素之外,
11:02
is that I spend a lot of time around mathematicians,
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我花很多時間和數學家相處,
11:05
and mathematicians are drawn to places where there's a lot of data
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數學家被吸引到很多數據的地方,
11:08
because they can use it to tease signals out of noise.
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因為他們使用數據在雜亂中歸類出信號。
11:11
And those correlations that they can tease out, they're not
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而他們可以整理出來的相互關係,
11:14
necessarily causal agents, but math, in this day and age,
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並非必然的因果關係媒介,但在今日
11:18
is like a giant set of power tools
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數學就像是我們丟棄在地板上
11:20
that we're leaving on the floor, not plugged in in health,
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的一大組有力的工具,我們仍然使用手鋸
11:24
while we use hand saws.
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不將它跟健康結合。
11:26
If we have a lot of shared genotypes, and a lot of shared
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如果我們有很多被分享的基因型,很多被分享的
11:31
outcomes, and a lot of shared lifestyle choices,
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結果,很多被分享的生活型式選擇,
11:33
and a lot of shared environmental information, we can start
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很多被分享的環境資訊,我們可以開始
11:36
to tease out the correlations between subtle variations
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在細微的差異中整理出相互關係,
11:39
in people, the choices they make and the health that they create as a result of those choices,
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在人跟人之間,他們做的選擇間, 還有這些選擇造就的健康間,
11:44
and there's open-source infrastructure to do all of this.
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有一個開放資源的基礎建設在做這所有的事。
11:47
Sage Bionetworks is a nonprofit that's built a giant math system
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賽智生物網絡 (Sage Bionetworks) 是一個巨大數學系統的非營利組織,
11:50
that's waiting for data, but there isn't any.
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正在等待資料,但不多。
11:55
So that's what I do. I've actually started what we think is
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於是我這麼做。我開始進行我們認為
11:58
the world's first fully digital, fully self-contributed,
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世界上第一個完全數位化,完全自發性,
12:02
unlimited in scope, global in participation, ethically approved
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沒有範圍限制,全球參與,合乎道德的
12:07
clinical research study where you contribute the data.
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臨床研究,由你們貢獻數據。
12:11
So if you reach behind yourself and you grab the dust,
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所以如果你往身後抓到塵埃,
12:13
if you reach into your body and grab your genome,
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如果你進入你的身體內找到基因組,
12:16
if you reach into the medical system and somehow extract your medical record,
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如果你進入醫療系統內 截取出你的醫療紀錄,
12:19
you can actually go through an online informed consent process --
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你確實可通過線上的受試者同意書過程 --
12:22
because the donation to the commons must be voluntary
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因為捐贈給公有物一定要出於自願,
12:25
and it must be informed -- and you can actually upload
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且一定要被告知 -- 而且你可以上傳
12:28
your information and have it syndicated to the
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你的資訊,讓它被打包後傳輸到專門進行
12:30
mathematicians who will do this sort of big data research,
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這種大規模數據研究的數學家那裡,
12:33
and the goal is to get 100,000 in the first year
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我們的目標是第一年可以達到10萬人,
12:36
and a million in the first five years so that we have
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第五年可以達到100萬人,這樣我們就會有
12:39
a statistically significant cohort that you can use to take
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一個具有統計學上顯著性差異的一个樣本。我们可以
12:42
smaller sample sizes from traditional research
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將傳統研究中的較小樣品數
12:45
and map it against,
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拿來跟它比較,
12:46
so that you can use it to tease out those subtle correlations
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找出使我們每個個體與眾不同的變量
12:49
between the variations that make us unique
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之間的細微關係
12:52
and the kinds of health that we need to move forward as a society.
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以及我們整體社會朝著的健康方向之間。
12:56
And I've spent a lot of time around other commons.
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我已經花了很多時間在其它公有物上。
12:59
I've been around the early web. I've been around
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我在網絡初期就開始參與。
13:02
the early creative commons world, and there's four things
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我也經過早期有創意的公有物世界,
13:04
that all of these share, which is, they're all really simple.
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當中有四個共同點,都非常簡單。
13:08
And so if you were to go to the website and enroll in this study,
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如果你上這個網站也參加這項研究,
13:10
you're not going to see something complicated.
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你將不會看到很複雜的東西。
13:13
But it's not simplistic. These things are weak intentionally,
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但它也不是過分簡單的。 這些是有意被做得較不充足的,
13:18
right, because you can always add power and control to a system,
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因為你總是可以在一個系統內加上權力和控制,
13:21
but it's very difficult to remove those things if you put them in at the beginning,
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但是一旦你一開始就加入它們, 之後要移除是非常困難的,
13:25
and so being simple doesn't mean being simplistic,
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於是簡單並不代表過分單純化,
13:27
and being weak doesn't mean weakness.
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不充足並不代表缺點。
13:29
Those are strengths in the system.
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這些是系統內的強項。
13:32
And open doesn't mean that there's no money.
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資源開放也不代表沒有收益。
13:34
Closed systems, corporations, make a lot of money
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封閉的系統和企業在資源開放的網路上
13:37
on the open web, and they're one of the reasons why the open web lives
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賺很多錢,它們是很多 開放資源網路得以生存的原因之一,
13:41
is that corporations have a vested interest in the openness
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企業在系統開放性中取得
13:44
of the system.
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既得利益。
13:46
And so all of these things are part of the clinical study that we've created,
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所以全部這些都是我們 已經創造的臨床研究中的一部分,
13:50
so you can actually come in, all you have to be is 14 years old,
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於是你真的可以加入,只要你已經滿 14 歲,
13:53
willing to sign a contract that says I'm not going to be a jerk,
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願意簽署一份我將不會變成混蛋的合約,
13:55
basically, and you're in.
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基本上你就成功了。
13:58
You can start analyzing the data.
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你可以開始分析數據。
14:00
You do have to solve a CAPTCHA as well. (Laughter)
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你也必須要輸入驗證碼。 (笑聲)
14:04
And if you'd like to build corporate structures on top of it,
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如果你想要在這之上建立企業架構,
14:07
that's okay too. That's all in the consent,
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那也是可以的。這些都在同意書內,
14:10
so if you don't like those terms, you don't come in.
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所以如果你不喜歡這些條款,你不會參與。
14:13
It's very much the design principles of a commons
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我們用試著要帶入健康數據的公有物
14:16
that we're trying to bring to health data.
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的設計規則大致如此。
14:19
And the other thing about these systems is that it only takes
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跟這些系統相關的另一件事是
14:22
a small number of really unreasonable people working together
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只需要一小群真的很不理性的人合作
14:25
to create them. It didn't take that many people
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來創造它們。維基百科並不需要
14:28
to make Wikipedia Wikipedia, or to keep it Wikipedia.
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很多人來創造和維持。
14:32
And we're not supposed to be unreasonable in health,
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我們不應該在健康方面不理性,
14:34
and so I hate this word "patient."
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而且我討厭「忍受/病人」這個字 (patient)。
14:36
I don't like being patient when systems are broken,
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當系統和醫療制度崩壞的時候,
14:39
and health care is broken.
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我不喜歡忍受/當病人。
14:42
I'm not talking about the politics of health care, I'm talking about the way we scientifically approach health care.
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我不是在說醫療制度的政治, 我在說我們科學上處理醫療制度的方法。
14:46
So I don't want to be patient. And the task I'm giving to you
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所以我不要繼續忍受下去。我要給你們的任務是
14:49
is to not be patient. So I'd like you to actually try,
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不要束手旁觀。我要你們真的去試試看,
14:52
when you go home, to get your data.
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回到家後,蒐集你的資料。
14:55
You'll be shocked and offended and, I would bet, outraged,
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我保證你會因為資料有多難取得而感到
14:58
at how hard it is to get it.
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驚訝且被冒犯。
15:00
But it's a challenge that I hope you'll take,
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但我希望這是一個你會接受的挑戰,
15:03
and maybe you'll share it. Maybe you won't.
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或許你還會分享。或許你不會。
15:06
If you don't have anyone in your family who's sick,
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如果你家族中沒有任何人生病,
15:07
maybe you wouldn't be unreasonable. But if you do,
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或許你不會不理性。但如果有的話,
15:10
or if you've been sick, then maybe you would.
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或者你生病了,那你可能會。
15:12
And we're going to be able to do an experiment in the next several months
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我們將能在接下來幾個月做一個實驗,
15:15
that lets us know exactly how many unreasonable people are out there.
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讓我們知道世上究竟有多少不理性的人。
15:18
So this is the Athena Breast Health Network. It's a study
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這是雅典娜胸部健康網絡,
15:21
of 150,000 women in California, and they're going to
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這是在加州15萬名女人的研究,他們將
15:24
return all the data to the participants of the study
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歸還所有參與者在研究中的數據,
15:27
in a computable form, with one-clickability to load it into
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用可計算得格式,只要按下一個按鍵就可以將它傳到
15:30
the study that I've put together. So we'll know exactly
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我匯集而成的研究中。於是我們將發現
15:33
how many people are willing to be unreasonable.
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究竟有多少人願意變得不理性。
15:35
So what I'd end [with] is,
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我的結語是,
15:38
the most beautiful thing I've learned since I quit my job
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自從我一年前辭職開始做這件事以來,
15:41
almost a year ago to do this, is that it really doesn't take
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當中最美妙的事是這真的不需要
15:44
very many of us to achieve spectacular results.
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我們當中很多人才能達到引人注目的結果。
15:48
You just have to be willing to be unreasonable,
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你只需要願意不理性些,
15:51
and the risk we're running is not the risk those 14 men
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而我們會有的風險和以前這 14 個男人中
15:53
who got yellow fever ran. Right?
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誰會得到黃熱病的風險不同。對吧?
15:55
It's to be naked, digitally, in public. So you know more
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這必須要在公開場合數位化地裸身。所以你知道
15:58
about me and my health than I know about you. It's asymmetric now.
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我和我的健康比我知道你得還要多。現在是不對稱的。
16:01
And being naked and alone can be terrifying.
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一個人裸身可以是非常嚇人的。
16:05
But to be naked in a group, voluntarily, can be quite beautiful.
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但在一個團體內自願地裸身可以是非常美妙的。
16:09
And so it doesn't take all of us.
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而且這不需要我們全部的人。
16:11
It just takes all of some of us. Thank you.
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只需要我們當中部分的人。謝謝。
16:14
(Applause)
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(掌聲)
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