ABOUT THE SPEAKER
Jamie Heywood - Healthcare revolutionary
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him.

Why you should listen

After finding out that his brother, Stephen, had the terminal illness ALS, Jamie Haywood founded the ALS Therapy Development Institute in 1999. ALS TDI is the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatments outside of academia and for-profit corporations. They were the first to publish research on the safety of using stem cells in ALS patients.

In 2005,Jamie and his youngest brother Ben, along with close friend Jeff Cole, built PatientsLikeMe.com to give patients control and access to their healthcare information and compare it to others like them. Its bold (and somewhat controversial) approach involves aggregating users health info in order to test the effects of particular treatments, bypassing clinical trials. It was named one of "15 companies that will change the world" by CNN Money.

Although his brother passed away in the fall of 2006, Jamie continues to serve as chairman of PatientsLikeMe and on the board of directors of ALS TDI. Jamie has raised over $50 million dollars for ALS TDI and was the subject of the biography His Brother’s Keeper, written by Jonathan Weiner. He was also featured in the documentary So Much So Fast, exploring the development of ALS TDI and the personal story of he and Stephen.

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

Jamie Heywood: The big idea my brother inspired

Jamie Heywood﹕我弟弟給我的靈感

Filmed:
594,245 views

當 Jamie Heywood 的弟弟成了漸凍人(肌肉萎縮性側索硬化症)﹐他決定和他一起對抗疾病。Heywood 兄弟建立了一個前所未有的網站﹐讓病患可以分享和追蹤疾病的資料 -- 他們發現﹐這些資料不但能夠安慰病患﹐還能解釋和預測疾病的過程。
- Healthcare revolutionary
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him. Full bio

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

00:15
When my brother哥哥 called me in December十二月 of 1998,
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我弟在98年12月打電話給我
00:18
he said, "The news新聞 does not look good."
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他說﹐我有一個壞消息
00:20
This is him on the screen屏幕.
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這就是他
00:22
He'd他會 just been diagnosed確診 with ALSALS,
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他剛知道他得了肌肉萎縮性側索硬化症
00:24
which哪一個 is a disease疾病 that the average平均 lifespan壽命 is three years年份.
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病患預期壽命是三年
00:28
It paralyzes癱瘓 you. It starts啟動 by killing謀殺
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這疾病會讓你完全失去行為能力
00:30
the motor發動機 neurons神經元 in your spinal cord.
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從殺死中樞神經中的運動神經元開始
00:33
And you go from being存在 a healthy健康,
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你逐漸地從一個健康
00:35
robust強大的 29-year-old-歲 male
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強壯的29歲男性
00:38
to someone有人 that cannot不能 breathe呼吸,
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變成一個無法呼吸
00:40
cannot不能 move移動, cannot不能 speak說話.
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無法移動﹐言語的人
00:46
This has actually其實 been, to me, a gift禮品,
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我把這次經驗看作一項禮物
00:50
because we began開始 a journey旅程
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我們開始學習
00:53
to learn學習 a new way of thinking思維 about life.
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用新的方法思考人生
00:56
And even though雖然 Steven史蒂芬 passed通過 away three years年份 ago
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雖然 Steven 離開我們三年了
01:00
we had an amazing驚人 journey旅程 as a family家庭.
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我們一起走過了一段神奇的旅途
01:02
We did not even --
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我們甚至沒有
01:05
I think adversity逆境 is not even the right word.
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我甚至不覺得這是不幸的事件
01:07
We looked看著 at this and we said, "We're going to do something with this
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我們接受它﹐然後把它當成一次機會
01:10
in an incredibly令人難以置信 positive way."
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用樂觀的態度面對
01:12
And I want to talk today今天
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我今天想對你們說的
01:14
about one of the things that we decided決定 to do,
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便是我們決定要做的事情之一
01:17
which哪一個 was to think about a new way of approaching接近 healthcare衛生保健.
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用一種嶄新的方式去思考醫療產業
01:21
Because, as we all know here today今天,
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在座的我們都知道
01:23
it doesn't work very well.
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現在的狀況並不是很理想
01:25
I want to talk about it in the context上下文 of a story故事.
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我希望用故事的方式和你們討論
01:28
This is the story故事 of my brother哥哥.
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我弟弟的故事
01:30
But it's just a story故事. And I want to go beyond the story故事,
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我希望在他的故事以後
01:33
and go to something more.
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我們能發現我們能做的事還有很多
01:35
"Given特定 my status狀態, what is the best最好 outcome結果
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“就我的疾病來說﹐什麼是最樂觀的情況
01:38
I can hope希望 to achieve實現, and how do I get there?"
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我該怎麼做﹐才能達到那樣的情況﹖”
01:41
is what we are here to do in medicine醫學, is what everyone大家 should do.
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這便是醫療所該做的﹐每個人所該做的
01:44
And those questions問題 all have variables變量 to them.
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每個人的問題和解答都不同
01:46
All of our statuses狀態 are different不同.
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因為每個人的狀況不同
01:48
All of our hopes希望 and dreams, what we want to accomplish完成,
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我們想達到的希望和夢想
01:50
is different不同, and our paths路徑 will be different不同,
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都有所不同﹐我們的路徑也不同
01:52
they are all stories故事.
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這些都是故事
01:54
But it's a story故事 until直到 we convert兌換 it to data數據
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但除非我們把這些故事變成數據
01:56
and so what we do, this concept概念 we had,
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我們的概念是
01:58
was to take Steven's史蒂芬的 status狀態, "What is my status狀態?"
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把 Steve 的病情 “我的病情是什麼﹖”
02:01
and go from this concept概念 of walking步行, breathing呼吸,
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把這個概念延伸到走路﹐呼吸
02:06
and then his hands, speak說話,
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手的移動﹐說話
02:09
and ultimately最終 happiness幸福 and function功能.
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以及心理的情緒和各種反應
02:13
So, the first set of pathologies病理, they end結束 up in the stick man
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第一組病狀﹐他們會組成圖片上的
02:15
on his icon圖標,
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這個人形
02:17
but the rest休息 of them are really what's important重要 here.
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但其他的資料才是重要的
02:20
Because Steven史蒂芬, despite儘管 the fact事實 that he was paralyzed,
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因為就算 Steven 已經癱瘓
02:23
as he was in that pool, he could not walk步行,
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他在泳池裡﹐他不能走動
02:26
he could not use his arms武器 -- that's why he had the little floaty輕飄 things on them,
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他不能移動手臂﹐所以才需要手臂上這些東西幫助他漂浮
02:28
did you see those? --
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看到了嗎﹖
02:30
he was happy快樂. We were at the beach海灘,
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他很快樂﹐我們在沙灘上
02:32
he was raising提高 his son兒子, and he was productive生產的.
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他正舉起他的兒子﹐他還有反應
02:34
And we took this, and we converted轉換 it into data數據.
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我們把這些資料都變成數據
02:39
But it's not a data數據 point at that one moment時刻 in time.
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這個數據不只是一個時間
02:41
It is a data數據 point of Steven史蒂芬 in a context上下文.
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而是過程裡的一個時間點
02:43
Here he is in the pool. But here he is healthy健康,
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這時他在游泳池裡﹐但這裡他還很健康
02:45
as a builder建設者: taller, stronger,
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一個又高又壯的建築工人
02:48
got all the women婦女, amazing驚人 guy.
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所有的女孩都喜歡他﹐了不起的男人
02:50
Here he is walking步行 down the aisle走道,
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然後他結婚
02:52
but he can barely僅僅 walk步行 now, so it's impaired受損.
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但他不太能走﹐有些顛簸
02:55
And he could still hold保持 his wife's妻子 hand, but he couldn't不能 do buttons鈕扣 on his clothes衣服,
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他還可以牽著他太太的手﹐但他無法自己扣上釦子
02:57
can't feed飼料 himself他自己.
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不能自己吃飯
02:59
And here he is, paralyzed completely全然,
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到最後﹐他完全癱瘓了
03:01
unable無法 to breathe呼吸 and move移動, over this time journey旅程.
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他不能呼吸﹐不能動
03:03
These stories故事 of his life, converted轉換 to data數據.
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他人生旅程化為數據
03:06
He renovated裝修 my carriage運輸 house
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他整修了我的馬廄
03:08
when he was completely全然 paralyzed, and unable無法 to speak說話,
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當他完全癱瘓﹐不能說話
03:10
and unable無法 to breathe呼吸, and he won韓元 an award for a historic歷史性 restoration恢復.
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不能呼吸時﹐他贏得了歷史文物整修獎
03:16
So, here's這裡的 Steven史蒂芬 alone單獨, sharing分享 this story故事 in the world世界.
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這是他一個人的故事
03:18
And this is the insight眼光, the thing that we are
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這就是這件事的意義﹐也是
03:21
excited興奮 about,
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我們興奮之處
03:23
because we have gone走了 away from the community社區 that we are,
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我們從社區走出來
03:26
the fact事實 that we really do love each other and want to care關心 for each other.
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把我們對彼此的愛和關懷
03:29
We need to give to others其他 to be successful成功.
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把它分享給他人
03:31
So, Steven史蒂芬 is sharing分享 this story故事,
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Steven 分享了他的故事
03:34
but he is not alone單獨.
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但他並不孤單
03:36
There are so many許多 other people sharing分享 their stories故事.
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有許多其他人正分享他們的故事
03:38
Not stories故事 in words, but stories故事 in data數據 and words.
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不只是語言﹐這些故事也由數據寫成
03:41
And we convert兌換 that information信息 into this structure結構體,
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我們把這些資料放進這個程式
03:44
this understanding理解, this ability能力 to convert兌換
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把這些理解從故事
03:47
those stories故事 into something that is computable可計算,
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化為可計算的數據
03:49
to which哪一個 we can begin開始 to change更改 the way
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從這裡開始﹐我們可以改變
03:51
medicine醫學 is doneDONE and delivered交付.
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我們現有的健康醫療
03:53
We did this for ALSALS. We can do this for depression蕭條,
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從肌肉萎縮性側索硬化症﹐憂鬱症
03:55
Parkinson's帕金森氏 disease疾病, HIVHIV.
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帕金斯症﹐愛滋病都可以用一樣的方法
03:57
These are not simple簡單, they are not internet互聯網 scalable可擴展性;
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這並不容易﹐不只是用戶的增加
03:59
they require要求 thought and processes流程
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還有更多考量和過程
04:01
to find the meaningful富有意義的 information信息 about the disease疾病.
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才能把這些疾病資料變成有意義的資訊
04:04
So, this is what it looks容貌 like when you go to the website網站.
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這是你進入網站時的畫面
04:07
And I'm going to show顯示 you what Patients耐心 Like Me,
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這個網站叫“病患如我”
04:10
the company公司 that myself, my youngest最年輕的 brother哥哥
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是由我﹐我小弟
04:12
and a good friend朋友 from MITMIT started開始.
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和一個麻省理工的朋友一起創立的
04:14
Here are the actual實際 patients耐心, there are 45,000 of them now,
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現在有大約四萬五千個病患
04:17
sharing分享 their stories故事 as data數據.
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和我們分享他們的故事和數據
04:19
Here is an M.S. patient患者.
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這裡有個多發性硬化症病患
04:21
His name名稱 is Mike麥克風, and he is uniformly均勻 impaired受損
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他叫麥克﹐他的認知﹐視覺
04:23
on cognition認識, vision視力, walking步行, sensation感覺.
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行走﹐感知都受損了
04:26
Those are things that are different不同 for each M.S. patient患者.
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每個多發性硬化症病患都不太一樣
04:28
Each of them can have a different不同 characteristic特性.
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每個人的病徵都不同
04:30
You can see fibromyalgia纖維肌痛, HIVHIV, ALSALS, depression蕭條.
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你可以看到纖維肌症﹐愛滋﹐憂鬱症﹐和肌肉萎縮性側索硬化症
04:35
Look at this HIVHIV patient患者 down here, ZinnyZinny.
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這裡有個叫金尼的愛滋病患
04:38
It's two years年份 of this disease疾病. All of the symptoms症狀 are not there.
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他已經得愛滋兩年了﹐還沒有出現任何病徵
04:41
But he is working加工 to keep his CD光盤4 count計數 high
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他正努力保持高免疫細胞
04:43
and his viral病毒 level水平 low so he can make his life better.
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和病毒數量低﹐讓他能夠過得更好
04:46
But you can aggregate骨料 this and you can discover發現 things about treatments治療.
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綜合這些數據﹐就能發現不同治療所造成的差別
04:50
Look at this, 2,000 people almost幾乎, on Copaxone帕松.
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這裡有兩千多個正在使用格拉默的病患
04:52
These are patients耐心 currently目前 on drugs毒品,
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這些正在用藥的病人一起
04:54
sharing分享 data數據.
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分享數據
04:56
I love some of these, physical物理 exercise行使, prayer禱告.
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有些很棒﹐運動﹐禱告
04:59
Anyone任何人 want to run a comparative比較 effectiveness效用 study研究
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有人想要做禱告和其他治療法的比較研究嗎﹖
05:01
on prayer禱告 against反對 something? Let's look at prayer禱告.
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讓我們看看禱告
05:03
What I love about this, just sort分類 of interesting有趣 design設計 problems問題.
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我最喜歡的是這些有趣的設計問題
05:07
These are why people pray祈禱.
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這是人們禱告的原因
05:09
Here is the schedule時間表 of how frequently經常 they -- it's a dose劑量.
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這是他們禱告的頻率﹐像個劑量
05:11
So, anyone任何人 want to see the 32 patients耐心 that pray祈禱 for 60 minutes分鐘 a day,
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如果你想知道32個每天禱告60分鐘的病患是不是比較健康
05:14
and see if they're doing better, they probably大概 are.
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療癒程度是不是比較好﹐答案是“是的”
05:16
Here they are. It's an open打開 network網絡,
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你可以看到﹐這些都是開放的
05:19
everybody每個人 is sharing分享. We can see it all.
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我們可以看到每個人分享的資訊
05:22
Or, I want to look at anxiety焦慮, because people are praying祈禱 for anxiety焦慮.
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如果我想看焦慮症﹐人們為了焦慮而禱告
05:25
And here is data數據 on 15,000 people's人們 current當前 anxiety焦慮, right now.
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這裡有一萬五千個焦慮患者的數據
05:30
How they treat對待 it,
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他們如何治療
05:33
the drugs毒品, the components組件 of it,
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他們用的藥物﹐裡面的成份
05:36
their side effects效果, all of it in a rich豐富 environment環境,
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副作用﹐這裡有豐富的資料
05:39
and you can drill鑽頭 down and see the individuals個人.
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你可以繼續深入研究各個病患
05:41
This amazing驚人 data數據 allows允許 us to drill鑽頭 down and see
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這些驚人的數據讓我們深入了解
05:44
what this drug藥物 is for --
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這些藥物的作用
05:47
1,500 people on this drug藥物, I think. Yes.
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一千五百個病患正在使用這個藥
05:49
I want to talk to the 58 patients耐心 down here
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讓我看看這58個病患
05:51
who are taking服用 four milligrams毫克 a day.
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他們每天吃四毫克
05:53
And I want to talk to the ones那些 of those that have been doing
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我想和他們對話﹐看看他們用了兩年以後
05:55
it for more than two years年份.
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現在的狀況如何
06:01
So, you can see the duration持續時間.
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你可以看見他們的療程
06:03
All open打開, all available可得到.
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一切資料都是開放的
06:07
I'm going to log日誌 in.
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我現在要登錄
06:11
And this is my brother's兄弟 profile輪廓.
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這是我弟弟的檔案
06:13
And this is a new version of our platform平台 we're launching發射 right now.
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這是我們最近開放的新版平臺
06:17
This is the second第二 generation. It's going to be in Flash.
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第二代﹐用 Flash 播放器
06:19
And you can see here, as this animates動畫 over,
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你可以看到﹐當它移動的時候
06:22
Steven's史蒂芬的 actual實際 data數據 against反對 the background背景 of all other patients耐心,
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Steven 的數據和其他病患的數據
06:25
against反對 this information信息.
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相互比較
06:28
The blue藍色 band is the 50th percentile百分. Steven史蒂芬 is the 75th percentile百分,
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藍色帶是五十個百分點﹐Steven 是七十五
06:30
that he has non-genetic非遺傳 ALSALS.
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他患的是非遺傳性的肌肉萎縮性側索硬化症
06:33
You scroll滾動 down in this profile輪廓 and you can see
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這個檔案下面
06:35
all of his prescription處方 drugs毒品,
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有他所有處方藥的記錄
06:37
but more than that, in the new version, I can look at this interactively交互式.
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不只這樣﹐新版本裡可以互動
06:40
Wait, poor較差的 spinal capacity容量.
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受損的脊椎功能
06:42
Doesn't this remind提醒 you of a great stock股票 program程序?
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這是否令你想起那些很好的股票軟體﹖
06:44
Wouldn't豈不 it be great if the technology技術 we used to take care關心 of ourselves我們自己
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如果我們能把這些拿來賺錢的科技拿來照顧健康
06:46
was as good as the technology技術 we use to make money?
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那不是很好嗎﹖
06:49
DetrolDetrol. In the side effects效果 for his drug藥物,
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托特羅定﹐這裡有藥物的副作用
06:51
integrated集成 into that, the stem cell細胞 transplant移植 that he had,
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結合幹細胞移植
06:53
the first in the world世界, shared共享 openly公然 for anyone任何人 who wants to see it.
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全世界第一個公開的資料站
06:59
I love here -- the cyberkineticscyberkinetics implant注入,
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我喜歡這個﹐植入性芯片
07:01
which哪一個 was, again, the only patient's耐心 data數據 that was online線上 and available可得到.
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這也是網路上唯一公開的病患數據
07:05
You can adjust調整 the time scale規模. You can adjust調整 the symptoms症狀.
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你可以調整時間軸﹐症狀
07:07
You can look at the interaction相互作用 between之間 how I treat對待 my ALSALS.
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我如何醫治我的肌肉萎縮性側索硬化症
07:11
So, you click點擊 down on the ALSALS tab標籤 there.
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點下面的肌肉萎縮性側索硬化症標籤
07:13
I'm taking服用 three drugs毒品 to manage管理 it. Some of them are experimental試驗.
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我吃三種藥﹐一些還在實驗階段
07:16
I can look at my constipation便秘, how to manage管理 it.
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我該怎麼解決我的便秘問題
07:18
I can see magnesium citrate檸檬酸鹽, and the side effects效果
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檸檬酸鎂和它的副作用
07:20
from that drug藥物 all integrated集成 in the time
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在它的有效期之內
07:22
in which哪一個 they're meaningful富有意義的.
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它做了什麼
07:25
But I want more.
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我還想要更多
07:27
I don't want to just look at this cool device設備, I want to take this
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我不想只是看看這些功能
07:29
data數據 and make something even better.
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我希望能用這些數據改善現狀
07:31
I want my brother's兄弟 center中央 of the universe宇宙 and his symptoms症狀
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我要我弟弟的狀況﹐病症
07:34
and his drugs毒品,
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他的用藥
07:37
and all of the things that interact相互作用 among其中 those,
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副作用﹐所有這些資訊
07:39
the side effects效果, to be in this beautiful美麗 data數據 galaxy星系
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放進這個美麗的數據銀河
07:42
that we can look at in any way we want to understand理解 it,
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就可以用它來做很多研究
07:45
so that we can take this information信息
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我們可以利用這些資料
07:48
and go beyond just this simple簡單 model模型
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超越過去的記錄模式
07:52
of what a record記錄 is.
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.
07:55
I don't even know what a medical record記錄 is.
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我甚至不知道醫療記錄是什麼
07:57
I want to solve解決 a problem問題. I want an application應用.
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我祇想解決問題﹐我想要一個應用程式
07:59
So, can I take this data數據 -- rearrange改編 yourself你自己,
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我把這些數據﹐你自己可以調整
08:02
put the symptoms症狀 in the left, the drugs毒品 across橫過 the top最佳,
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把症狀放在左邊﹐藥物放上面
08:04
tell me everything we know about Steven史蒂芬 and everyone大家 else其他,
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這可以告訴我們有關 Steven 和所有人的資料
08:06
and what interacts交互.
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哪些重複了
08:09
Years年份 after he's had these drugs毒品,
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在他用這些藥的多年以後
08:11
I learned學到了 that everything he did to manage管理 his excess過量 saliva唾液,
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我終於知道他為了控制唾液
08:14
including包含 some positive side effects效果 that came來了 from other drugs毒品,
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和其他一些藥的副作用
08:17
were making製造 his constipation便秘 worse更差.
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惡化了他的便秘問題
08:19
And if anyone's任何人的 ever had severe嚴重 constipation便秘,
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如果有人曾經有過嚴重便秘
08:21
and you don't understand理解 how much of an impact碰撞 that has on your life --
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你不了解這對你生活的影響有多大
08:23
yes, that was a pun雙關語.
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這是一個雙關語
08:26
You're trying to manage管理 these,
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你嘗試去理解這些
08:28
and this grid is available可得到 here,
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這個表格就在這裡
08:30
and we want to understand理解 it.
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我們想要了解
08:33
No one's那些 ever had this kind of information信息.
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在這之前從來沒有人擁有這些資料
08:36
So, patients耐心 have this. We're for patients耐心.
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這是為了病患做的
08:38
This is all about patient患者 health健康 care關心, there was no doctors醫生 on our network網絡.
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病患分享他們的醫療經驗﹐這裡沒有駐站醫生
08:40
This is about the patients耐心.
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全是病患自己
08:42
So, how can we take this and bring帶來 them a tool工具
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我們該如何使用這些資料
08:45
that they can go back and they can engage從事 the medical system系統?
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讓病患可以把這些資料帶回他們所使用的醫療系統﹖
08:47
And we worked工作 hard, and we thought about it and we said,
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我們努力的思考﹐我們想
08:50
"What's something we can use all the time,
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“什麼是我們現在的醫療系統中
08:52
that we can use in the medical care關心 system系統,
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所使用﹐而且每個人
08:54
that everyone大家 will understand理解?"
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都明白的﹖”
08:56
So, the patients耐心 print打印 it out,
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於是病患把它印出來
08:58
because hospitals醫院 usually平時 block us
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因為醫院拒絕我們
09:00
because they believe we are a social社會 network網絡.
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他們覺得我們只是網路社群
09:03
It's actually其實 the most used feature特徵 on the website網站.
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這是網站上最多人使用的功能
09:05
Doctors醫生 actually其實 love this sheet, and they're actually其實 really engaged訂婚.
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醫生們喜歡這個資料﹐他們非常投入
09:08
So, we went from this story故事 of Steven史蒂芬
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於是我們從 Steven 的故事
09:11
and his history歷史 to data數據, and then back to paper,
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把故事化為數據﹐然後回到紙上
09:14
where we went back and engaged訂婚 the medical care關心 system系統.
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然後回到我們的醫療系統
09:15
And here's這裡的 another另一個 paper.
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這是另外一種紙
09:17
This is a journal日誌, PNASPNAS --
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這是《國家科学院院刊》
09:19
I think it's the Proceedings論文集 of the National國民 Academy學院 of Science科學
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這是美國國家科學院裡的
09:21
of the United聯合的 States狀態 of America美國.
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一項刊物
09:23
You've seen看到 multiple of these today今天, when everyone's大家的 bragging吹牛 about
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你今天已經看到它幾次了﹐每個人都在吹噓
09:25
the amazing驚人 things they've他們已經 doneDONE.
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他們做的了不起的事情
09:27
This is a report報告 about a drug藥物 called lithium.
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這裡有個關於鋰這個藥物的報告
09:29
Lithium, that is a drug藥物 used to treat對待 bipolar雙極 disorder紊亂,
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鋰本來是用來治療躁鬱症的
09:33
that a group in Italy意大利 found發現
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意大利的一個團體發現
09:35
slowed放緩 ALSALS down in 16 patients耐心, and published發表 it.
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它減緩了16個肌肉萎縮性側索硬化症的症狀﹐就發表了這篇文章
09:38
Now, we'll skip跳躍 the critiques批評 of the paper.
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我們先不批評這個期刊
09:40
But the short story故事 is: If you're a patient患者,
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簡單的說﹐如果你是病患
09:42
you want to be on the blue藍色 line.
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你想在藍線上
09:44
You don't want to be on the red line, you want to be on the blue藍色 line.
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你不想在紅線上﹐你想在藍線上
09:46
Because the blue藍色 line is a better line. The red line
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因為藍線比較好﹐紅線
09:48
is way downhill下坡, the blue藍色 line is a good line.
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在下面﹐藍線是好的
09:50
So, you know we said -- we looked看著 at this, and what I love also
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我們看著這個﹐我覺得那些
09:54
is that people always accuse these Internet互聯網 sites網站
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批評網路不負責任地廣告藥物
09:56
of promoting促進 bad medicine醫學 and having people do things irresponsibly不負責任.
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讓人們做出錯誤決定的人也很有趣
09:59
So, this is what happened發生 when PNASPNAS published發表 this.
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當《國家科学院院刊》發表這篇文章以後
10:02
Ten percent百分 of the people in our system系統 took lithium.
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我們系統裡有一成的人開始使用鋰
10:05
Ten percent百分 of the patients耐心 started開始 taking服用 lithium based基於 on 16 patients耐心 of data數據
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一成的病患因為16個病患的醫療結果開始使用鋰
10:08
in a bad publication出版物.
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因為這個錯誤的報告
10:10
And they call the Internet互聯網 irresponsible不負責任.
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他們卻說網路不負責任
10:12
Here's這裡的 the implication意義 of what happens發生.
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這就是事情發生的經過
10:14
There's this one guy, named命名 Humberto溫貝托, from Brazil巴西,
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有個名叫 Humberto 的巴西人
10:17
who unfortunately不幸 passed通過 away nine months個月 ago,
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他在九個月前過世了
10:20
who said, "Hey, listen. Can you help us answer回答 this question?
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他說“聽著﹐你可以幫我們回答這個問題嗎﹖
10:22
Because I don't want to wait for the next下一個 trial審訊, it's going to be years年份.
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因為我不想等下次實驗結束﹐那還得等上多年
10:25
I want to know now. Can you help us?"
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我現在就要知道﹐你可以幫助我嗎﹖”
10:27
So, we launched推出 some tools工具, we let them track跟踪 their blood血液 levels水平.
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於是我們增加一些功能﹐讓他們追蹤血液質
10:30
We let them share分享 the data數據 and exchange交換 it.
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互相分享交換數據
10:32
You know, a data數據 network網絡.
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一個數據網
10:35
And they said, you know, "Jamie傑米, PLMPLM,
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然後他們說“我們可以把產品生命週期管理的概念
10:37
can you guys tell us whether是否 this works作品 or not?"
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運用在這裡嗎 ? ”
10:39
And we went around and we talked to people,
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於是我們四處問人
10:41
and they said, "You can't run a clinical臨床 trial審訊 like this. You know?
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他們說“你不能這樣做臨床測試
10:43
You don't have the blinding致盲, you don't have data數據,
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你們沒有雙盲測試﹐沒有數據
10:45
it doesn't follow跟隨 the scientific科學 method方法.
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這沒有任何科學方法
10:47
It's never going to work. You can't do it."
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這不行﹐你不能這樣做。”
10:49
So, I said, "Okay well we can't do that. Then we can do something harder更難."
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於是我說“好吧我們不做這個﹐我們做一些更困難的。”
10:52
(Laughter笑聲)
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(笑聲)
10:55
I can't say whether是否 lithium works作品 in all ALSALS patients耐心,
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我不知道鋰在肌肉萎縮性側索硬化症患者身上是否都管用
10:57
but I can say whether是否 it works作品 in Humberto溫貝托.
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但我知道它在 Humberto 身上是否管用
11:00
I bought a Mac蘋果電腦 about two years年份 ago, I converted轉換 over,
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兩年前我把電腦換成蘋果
11:02
and I was so excited興奮 about this new feature特徵 of the time machine
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我對“時間機器”這個功能非常興奮
11:04
that came來了 in Leopard. And we said -- because it's really cool,
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真的很酷
11:06
you can go back and you can look at the entire整個 history歷史 of your computer電腦,
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你可以回顧電腦裡的所有歷史
11:08
and find everything you've lost丟失, and I loved喜愛 it.
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找到所有消失的資料﹐我非常喜歡
11:10
And I said, "What if we built內置 a time machine for patients耐心,
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我說“我們可以為患者做一個時間機器嗎
11:14
except instead代替 of going backwards向後, we go forwards前鋒.
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但不是往回看﹐而是往未來前進
11:17
Can we find out what's going to happen發生 to you,
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我們可以知道他們的病將會如何發展
11:20
so that you can maybe change更改 it?"
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或許可以改變這個結果﹖”
11:23
So, we did. We took all the patients耐心 like Humberto溫貝托,
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於是我們聚集了所有病患資料
11:26
That's the Apple蘋果 background背景, we stole偷了 that because we didn't have time
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這個背景是蘋果的﹐因為我們沒有時間做自己的背景
11:28
to build建立 our own擁有. This is a real真實 app應用 by the way.
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這是一個真正的應用程式
11:30
This is not just graphics圖像.
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不只是圖表
11:32
And you take those data數據, and we find the patients耐心 like him, and we bring帶來
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把所有病患,像他的病患
11:34
their data數據 together一起. And we bring帶來 their histories歷史 into it.
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把他們的患病過程放進去
11:38
And then we say, "Well how do we line them all up?"
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我們想“我們該怎麼排列它們? ”
11:40
So, we line them all up so they go together一起
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於是我們把他們放在一起
11:42
around the meaningful富有意義的 points,
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在那些有意義的數據點上
11:44
integrated集成 across橫過 everything we know about the patient患者.
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綜合所有有關這個病患的訊息
11:46
Full充分 information信息, the entire整個 course課程 of their disease疾病.
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他們完整的病史
11:50
And that's what is going to happen發生 to Humberto溫貝托,
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這就是 Humberto 將要面對的病情
11:52
unless除非 he does something.
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除非他做了別的措施
11:54
And he took lithium, and he went down the line.
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他吃了鋰﹐他的線往下掉
11:57
And it works作品 almost幾乎 every一切 time.
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這幾乎百發百中
12:00
Now, the ones那些 that it doesn't work are interesting有趣.
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那些於別人不同的曲線圖很有趣
12:02
But almost幾乎 all the time it works作品.
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但幾乎毫無例外
12:05
It's actually其實 scary害怕. It's beautiful美麗.
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它準確地令我們害怕
12:07
So, we couldn't不能 run a clinical臨床 trial審訊, we couldn't不能 figure數字 it out.
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我們不能做臨床實驗﹐我們不能完全理解
12:09
But we could see whether是否 it was going to work for Humberto溫貝托.
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但我們可以知道它在 Humberto 身上是否管用
12:12
And yeah, all the clinicians臨床醫生 in the audience聽眾 will talk about power功率
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我們知道在場的醫生會談到統計效力
12:14
and all the standard標準 deviation偏差. We'll do that later後來.
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和標準差﹐我們晚點會提到
12:16
But here is the answer回答
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但答案在這裡
12:20
of the mean of the patients耐心 that actually其實 decided決定
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這是那些決定使用鋰的病人的
12:22
to take lithium.
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平均值
12:24
These are all the patients耐心 that started開始 lithium.
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這些是全部使用鋰的病患
12:26
It's the Intent意圖 to Treat對待 Curve曲線.
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這是他們的治療曲線
12:28
You can see here, the blue藍色 dots on the top最佳, the light ones那些,
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你也可以看到﹐上面淡淡的藍點
12:32
those are the people in the study研究 in PNASPNAS
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是《國家科学院院刊》裡的病患
12:34
that you wanted to be on. And the red ones那些 are the ones那些,
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也是人們想要得到的結果
12:36
the pink ones那些 on the bottom底部 are the ones那些 you didn't want to be.
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下面的粉色點則是你不想要的結果
12:38
And the ones那些 in the middle中間 are all of our patients耐心
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中間的就是我們的病患
12:41
from the start開始 of lithium at time zero,
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從開始服用鋰開始
12:43
going forward前鋒, and then going backward落後.
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繼續﹐然後繼續
12:47
So, you can see we matched匹配 them perfectly完美, perfectly完美.
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你可以看見這些數據完美的一致
12:50
Terrifyingly可怕 accurate準確 matching匹配.
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恐怖地相同
12:52
And going forward前鋒, you actually其實 don't want to be a lithium patient患者 this time.
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繼續下去﹐你就不希望自己是個服用鋰的病人了
12:56
You're actually其實 doing slightly worse更差 -- not significantly顯著,
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病情開始稍微惡化﹐雖然不是很嚴重
12:58
but slightly worse更差. You don't want to be a lithium patient患者 this time.
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但稍微惡化﹐你不想是服用鋰的病人了
13:01
But you know, a lot of people dropped下降 out,
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但許多人放棄繼續
13:04
the trial審訊, there is too much drop下降 out.
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做完這個實驗
13:06
Can we do the even harder更難 thing? Can we go to the patients耐心
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我們是否能找到那些
13:08
that actually其實 decided決定 to stay on lithium,
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繼續服用鋰的病人
13:12
because they were so convinced相信 they were getting得到 better?
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因為他們認為他們的病情已經開始好轉
13:14
We asked our control控制 algorithm算法,
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我們控制算法的結果是
13:16
are those 69 patients耐心 -- by the way, you'll你會 notice注意
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這69個病人
13:18
that's four times the number of patients耐心 in the clinical臨床 trial審訊 --
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也就是接受臨床實驗的四倍
13:21
can we look at those patients耐心 and say,
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我們看這些病患﹐然後說
13:24
"Can we match比賽 them with our time machine
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“我們可以把他們放進我們的時間機器
13:27
to the other patients耐心 that are just like them,
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和其他的病患比較一下
13:29
and what happens發生?"
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看看會有什麼結果”
13:31
Even the ones那些 that believed相信 they were getting得到 better
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結果是就算他們相信自己的病情好轉了
13:34
matched匹配 the controls控制 exactly究竟. Exactly究竟.
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事實上卻和一樣。
13:37
Those little lines? That's the power功率.
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這些線是什麼﹖這就是統計效力
13:39
So, we -- I can't tell you lithium doesn't work. I can't tell you
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我不能告訴你鋰不管用
13:41
that if you did it at a higher更高 dose劑量
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我不能說如果你用更高劑量
13:43
or if you run the study研究 proper正確 -- I can tell you
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和你再做其他實驗﹐但我可以告訴你
13:45
that for those 69 people that took lithium,
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那服用鋰的69人
13:49
they didn't do any better than the people that were just like them,
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他們的病情沒有改善
13:51
just like me,
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就像我一樣
13:53
and that we had the power功率 to detect檢測 that at about
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我們有統計效力可以測試
13:56
a quarter25美分硬幣 of the strengths優勢 reported報導 in the initial初始 study研究.
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原本的報告只有四分之一
13:59
We did that one year ahead of the time
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我們比國家研究院贊助百萬的
14:02
when the first clinical臨床 trial審訊 funded資助 by the NIHNIH
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臨床實驗還要早一年開始
14:04
for millions百萬 of dollars美元 failed失敗 for futility無用 last week,
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上個禮拜他們公佈了他們的失敗
14:07
and announced公佈 it.
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.
14:10
So, remember記得 I told you about my brother's兄弟 stem cell細胞 transplant移植.
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記得我弟的幹細胞移植嗎
14:13
I never really knew知道 whether是否 it worked工作.
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我不知道那管不管用
14:16
And I put 100 million百萬 cells細胞 in his cisterna延髓池 magna麥格納,
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我在他的小腦延髓池和腰椎
14:19
in his lumbar cord,
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植入了一億個細胞
14:21
and filled填充 out the IRBs機構審查委員會 and did all this work,
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填了一個同意臨床試驗證明書﹐做了這些
14:23
and I never really knew知道.
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但我從來沒有真正知道
14:26
How did I not know?
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我怎麼可能不知道﹖
14:28
I mean, I didn't know what was going to happen發生 to him.
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我甚至不知道這樣會發生什麼
14:30
I actually其實 asked Tim蒂姆, who is the quant定量 in our group --
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於是我問 Tim﹐我們這組人的數據分析師
14:33
we actually其實 searched搜索 for about a year to find someone有人
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我們找了一整年才找到
14:36
who could do the sort分類 of math數學 and statistics統計 and modeling造型
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一個可以算這些統計﹐這些模型的人
14:38
in healthcare衛生保健, couldn't不能 find anybody任何人. So, we went to the finance金融 industry行業.
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在醫界我們一個也找不到﹐於是我們到金融界找
14:41
And there are these guys who used to model模型 the future未來
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這些人擅於預測未來的利率
14:43
of interest利益 rates利率, and all that kind of stuff東東.
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那些所有的東西
14:45
And some of them were available可得到. So, we hired僱用 one.
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某些人突然有空了﹐於是我們請了一個
14:48
(Laughter笑聲)
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(笑聲)
14:51
We hired僱用 them, set them up, assisting協助 at lab實驗室.
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我們請他們來﹐請他們幫助我們的實驗室
14:53
I I.M. him things. That's the way I communicate通信 with him,
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把東西在網上用即時通寄給他
14:55
is like a little guy in a box. I I.M.edED Tim蒂姆. I said,
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像個盒子裡的小人﹐我在即時通上問他﹕
14:57
"Tim蒂姆 can you tell me whether是否 my brother's兄弟 stem cell細胞 transplant移植
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“Tim 你可以告訴我﹐我弟的幹細胞移植
14:59
worked工作 or not?"
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到底有沒有用? ”
15:02
And he sent發送 me this two days ago.
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於是兩天前﹐他寄了這個給我
15:05
It was that little outliers離群 there. You see that guy that lived生活 a long time?
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你看到這個異常值了嗎﹖有個男人活了很長時間﹖
15:08
We have to go talk to him. Because I'd like to know what happened發生.
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我們得去和他聊聊﹐因為我想知道他做了什麼
15:10
Because something went different不同.
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他一定做了一些不同的事
15:12
But my brother哥哥 didn't. My brother哥哥 went straight直行 down the line.
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因為我弟弟沒有。我弟弟的線掉下去了
15:15
It only works作品 about 12 months個月.
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支撐了十二個月
15:17
It's the first version of the time machine.
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這是時間機器的第一個版本
15:19
First time we ever tried試著 it. We'll try to get it better later後來
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我們第一次嘗試﹐我們會嘗試改進
15:21
but 12 months個月 so far.
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十二個月了
15:24
And, you know, I look at this,
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當我看到這個
15:28
and I get really emotional情緒化.
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我心裡很激動
15:30
You look at the patients耐心, you can drill鑽頭 in all the controls控制,
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你看著這些病患﹐你可以比較所有的對照值
15:32
you can look at them, you can ask them.
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你看著他們﹐你問他們
15:34
And I found發現 a woman女人 that had --
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我找到一個女人
15:37
we found發現 her, she was odd because she had data數據
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因為她的數據很奇怪
15:39
after she died死亡.
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在死後還有數據
15:41
And her husband丈夫 had come in and entered進入 her last functional實用 scores分數,
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他的丈夫在她死後登錄﹐輸入她最後的狀況
15:44
because he knew知道 how much she cared照顧.
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因為他知道她很在乎
15:47
And I am thankful感謝.
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我很感謝他
15:50
I can't believe that these people,
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我不敢相信這些人
15:52
years年份 after my brother哥哥 had died死亡,
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在我弟弟死後這麼多年
15:54
helped幫助 me answer回答 the question about whether是否
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告訴我多年前我做的這個手術
15:56
an operation手術 I did, and spent花費 millions百萬 of dollars美元 on
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這個花了幾百萬的手術
15:59
years年份 ago, worked工作 or not.
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究竟有沒有用
16:01
I wished希望 it had been there
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我希望當時就有這個網站
16:03
when I'd doneDONE it the first time,
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在我當時開始做得時候
16:05
and I'm really excited興奮 that it's here now,
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我真的很興奮現在我們有了這個功能
16:07
because the lab實驗室 that I founded成立
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因為在這個實驗室裡
16:12
has some data數據 on a drug藥物 that might威力 work,
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我們找到了一些數據﹐顯示某個藥可能有用
16:14
and I'd like to show顯示 it.
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我希望展示給你們看
16:18
I'd like to show顯示 it in real真實 time, now,
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現在
16:20
and I want to do that for all of the diseases疾病 that we can do that for.
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我希望為所有的病都做到
16:25
I've got to thank the 45,000 people
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我要謝謝這四萬五千個人
16:28
that are doing this social社會 experiment實驗 with us.
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和我們一起進行這次社群實驗
16:31
There is an amazing驚人 journey旅程 we are going on
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我們一起在一個神奇的路途上
16:34
to become成為 human人的 again,
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找回我們的人性
16:36
to be part部分 of community社區 again,
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3000
重新成為一個社群
16:39
to share分享 of ourselves我們自己, to be vulnerable弱勢,
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分享我們自己的脆弱
16:41
and it's very exciting扣人心弦. So, thank you.
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這是很令人興奮的。謝謝大家。
16:44
(Applause掌聲)
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(掌聲)
Translated by Coco Shen
Reviewed by Geoff Chen

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ABOUT THE SPEAKER
Jamie Heywood - Healthcare revolutionary
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him.

Why you should listen

After finding out that his brother, Stephen, had the terminal illness ALS, Jamie Haywood founded the ALS Therapy Development Institute in 1999. ALS TDI is the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatments outside of academia and for-profit corporations. They were the first to publish research on the safety of using stem cells in ALS patients.

In 2005,Jamie and his youngest brother Ben, along with close friend Jeff Cole, built PatientsLikeMe.com to give patients control and access to their healthcare information and compare it to others like them. Its bold (and somewhat controversial) approach involves aggregating users health info in order to test the effects of particular treatments, bypassing clinical trials. It was named one of "15 companies that will change the world" by CNN Money.

Although his brother passed away in the fall of 2006, Jamie continues to serve as chairman of PatientsLikeMe and on the board of directors of ALS TDI. Jamie has raised over $50 million dollars for ALS TDI and was the subject of the biography His Brother’s Keeper, written by Jonathan Weiner. He was also featured in the documentary So Much So Fast, exploring the development of ALS TDI and the personal story of he and Stephen.

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