TEDMED 2009
Jamie Heywood: The big idea my brother inspired
Jamie Heywood﹕我弟弟給我的靈感
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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。
Jamie Heywood - Healthcare revolutionary
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him. Full bio
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him. Full bio
Double-click the English transcript below to play the video.
00:15
When my brother called me in December of 1998,
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我弟在98年12月打電話給我
00:18
he said, "The news 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.
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這就是他
00:22
He'd just been diagnosed with ALS,
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他剛知道他得了肌肉萎縮性側索硬化症
00:24
which is a disease that the average lifespan is three years.
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病患預期壽命是三年
00:28
It paralyzes you. It starts by killing
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這疾病會讓你完全失去行為能力
00:30
the motor neurons 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 a healthy,
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你逐漸地從一個健康
00:35
robust 29-year-old male
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強壯的29歲男性
00:38
to someone that cannot breathe,
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變成一個無法呼吸
00:40
cannot move, cannot speak.
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無法移動﹐言語的人
00:46
This has actually been, to me, a gift,
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我把這次經驗看作一項禮物
00:50
because we began a journey
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我們開始學習
00:53
to learn a new way of thinking about life.
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用新的方法思考人生
00:56
And even though Steven passed away three years ago
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雖然 Steven 離開我們三年了
01:00
we had an amazing journey as a family.
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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 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 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 positive way."
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用樂觀的態度面對
01:12
And I want to talk today
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我今天想對你們說的
01:14
about one of the things that we decided to do,
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便是我們決定要做的事情之一
01:17
which was to think about a new way of approaching healthcare.
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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,
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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 of a story.
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我希望用故事的方式和你們討論
01:28
This is the story of my brother.
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我弟弟的故事
01:30
But it's just a story. And I want to go beyond the story,
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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 my status, what is the best outcome
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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 to achieve, 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, is what everyone 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 all have variables to them.
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每個人的問題和解答都不同
01:46
All of our statuses are different.
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因為每個人的狀況不同
01:48
All of our hopes and dreams, what we want to accomplish,
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我們想達到的希望和夢想
01:50
is different, and our paths will be different,
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都有所不同﹐我們的路徑也不同
01:52
they are all stories.
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這些都是故事
01:54
But it's a story until we convert it to data
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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 we had,
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我們的概念是
01:58
was to take Steven's status, "What is my status?"
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把 Steve 的病情 “我的病情是什麼﹖”
02:01
and go from this concept of walking, breathing,
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把這個概念延伸到走路﹐呼吸
02:06
and then his hands, speak,
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手的移動﹐說話
02:09
and ultimately happiness and function.
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以及心理的情緒和各種反應
02:13
So, the first set of pathologies, they end 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,
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這個人形
02:17
but the rest of them are really what's important here.
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但其他的資料才是重要的
02:20
Because Steven, despite the fact 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,
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他在泳池裡﹐他不能走動
02:26
he could not use his arms -- that's why he had the little floaty 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. We were at the beach,
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他很快樂﹐我們在沙灘上
02:32
he was raising his son, and he was productive.
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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 it into data.
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我們把這些資料都變成數據
02:39
But it's not a data point at that one moment in time.
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這個數據不只是一個時間
02:41
It is a data point of Steven in a context.
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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,
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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: taller, stronger,
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一個又高又壯的建築工人
02:48
got all the women, amazing 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 down the aisle,
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然後他結婚
02:52
but he can barely walk now, so it's impaired.
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但他不太能走﹐有些顛簸
02:55
And he could still hold his wife's hand, but he couldn't do buttons on his clothes,
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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 himself.
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不能自己吃飯
02:59
And here he is, paralyzed completely,
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到最後﹐他完全癱瘓了
03:01
unable to breathe and move, over this time journey.
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他不能呼吸﹐不能動
03:03
These stories of his life, converted to data.
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他人生旅程化為數據
03:06
He renovated my carriage house
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他整修了我的馬廄
03:08
when he was completely paralyzed, and unable to speak,
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當他完全癱瘓﹐不能說話
03:10
and unable to breathe, and he won an award for a historic restoration.
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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 Steven alone, sharing this story in the world.
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這是他一個人的故事
03:18
And this is the insight, the thing that we are
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這就是這件事的意義﹐也是
03:21
excited about,
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我們興奮之處
03:23
because we have gone away from the community that we are,
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我們從社區走出來
03:26
the fact that we really do love each other and want to care 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 to be successful.
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把它分享給他人
03:31
So, Steven is sharing this story,
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Steven 分享了他的故事
03:34
but he is not alone.
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但他並不孤單
03:36
There are so many other people sharing their stories.
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有許多其他人正分享他們的故事
03:38
Not stories in words, but stories in data 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 that information into this structure,
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我們把這些資料放進這個程式
03:44
this understanding, this ability to convert
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把這些理解從故事
03:47
those stories into something that is computable,
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化為可計算的數據
03:49
to which we can begin to change the way
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從這裡開始﹐我們可以改變
03:51
medicine is done and delivered.
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我們現有的健康醫療
03:53
We did this for ALS. We can do this for depression,
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從肌肉萎縮性側索硬化症﹐憂鬱症
03:55
Parkinson's disease, HIV.
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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, they are not internet scalable;
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這並不容易﹐不只是用戶的增加
03:59
they require thought and processes
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還有更多考量和過程
04:01
to find the meaningful information about the disease.
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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 like when you go to the website.
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這是你進入網站時的畫面
04:07
And I'm going to show you what Patients Like Me,
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這個網站叫“病患如我”
04:10
the company that myself, my youngest brother
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是由我﹐我小弟
04:12
and a good friend from MIT started.
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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 patients, 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 their stories as data.
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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.
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這裡有個多發性硬化症病患
04:21
His name is Mike, and he is uniformly impaired
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他叫麥克﹐他的認知﹐視覺
04:23
on cognition, vision, walking, sensation.
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行走﹐感知都受損了
04:26
Those are things that are different for each M.S. patient.
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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 characteristic.
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每個人的病徵都不同
04:30
You can see fibromyalgia, HIV, ALS, depression.
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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 HIV patient down here, Zinny.
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這裡有個叫金尼的愛滋病患
04:38
It's two years of this disease. All of the symptoms 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 to keep his CD4 count high
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他正努力保持高免疫細胞
04:43
and his viral level 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 this and you can discover things about treatments.
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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, on Copaxone.
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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 currently on drugs,
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這些正在用藥的病人一起
04:54
sharing data.
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分享數據
04:56
I love some of these, physical exercise, prayer.
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有些很棒﹐運動﹐禱告
04:59
Anyone want to run a comparative effectiveness study
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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 against something? Let's look at prayer.
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讓我們看看禱告
05:03
What I love about this, just sort of interesting design problems.
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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.
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這是人們禱告的原因
05:09
Here is the schedule of how frequently they -- it's a dose.
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這是他們禱告的頻率﹐像個劑量
05:11
So, anyone want to see the 32 patients that pray for 60 minutes 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 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 network,
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你可以看到﹐這些都是開放的
05:19
everybody is sharing. 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, because people are praying for anxiety.
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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 on 15,000 people's current anxiety, 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 it,
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他們如何治療
05:33
the drugs, the components of it,
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他們用的藥物﹐裡面的成份
05:36
their side effects, all of it in a rich environment,
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副作用﹐這裡有豐富的資料
05:39
and you can drill down and see the individuals.
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你可以繼續深入研究各個病患
05:41
This amazing data allows us to drill 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 is for --
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這些藥物的作用
05:47
1,500 people on this drug, 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 down here
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讓我看看這58個病患
05:51
who are taking four milligrams a day.
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他們每天吃四毫克
05:53
And I want to talk to the ones 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.
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現在的狀況如何
06:01
So, you can see the duration.
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你可以看見他們的療程
06:03
All open, all available.
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一切資料都是開放的
06:07
I'm going to log in.
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我現在要登錄
06:11
And this is my brother's profile.
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這是我弟弟的檔案
06:13
And this is a new version of our platform we're launching 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 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 over,
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你可以看到﹐當它移動的時候
06:22
Steven's actual data against the background of all other patients,
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Steven 的數據和其他病患的數據
06:25
against this information.
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相互比較
06:28
The blue band is the 50th percentile. Steven is the 75th percentile,
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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 ALS.
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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 down in this profile and you can see
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這個檔案下面
06:35
all of his prescription drugs,
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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.
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不只這樣﹐新版本裡可以互動
06:40
Wait, poor spinal capacity.
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受損的脊椎功能
06:42
Doesn't this remind you of a great stock program?
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這是否令你想起那些很好的股票軟體﹖
06:44
Wouldn't it be great if the technology we used to take care of ourselves
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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 we use to make money?
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那不是很好嗎﹖
06:49
Detrol. In the side effects for his drug,
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托特羅定﹐這裡有藥物的副作用
06:51
integrated into that, the stem cell transplant that he had,
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結合幹細胞移植
06:53
the first in the world, shared openly for anyone 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 cyberkinetics implant,
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我喜歡這個﹐植入性芯片
07:01
which was, again, the only patient's data that was online and available.
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這也是網路上唯一公開的病患數據
07:05
You can adjust the time scale. You can adjust the symptoms.
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你可以調整時間軸﹐症狀
07:07
You can look at the interaction between how I treat my ALS.
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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 down on the ALS tab 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 three drugs to manage it. Some of them are experimental.
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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, how to manage it.
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我該怎麼解決我的便秘問題
07:18
I can see magnesium citrate, and the side effects
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檸檬酸鎂和它的副作用
07:20
from that drug all integrated in the time
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在它的有效期之內
07:22
in which they're meaningful.
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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, I want to take this
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我不想只是看看這些功能
07:29
data 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 center of the universe and his symptoms
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我要我弟弟的狀況﹐病症
07:34
and his drugs,
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他的用藥
07:37
and all of the things that interact among those,
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副作用﹐所有這些資訊
07:39
the side effects, to be in this beautiful data galaxy
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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 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
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我們可以利用這些資料
07:48
and go beyond just this simple model
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超越過去的記錄模式
07:52
of what a record is.
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.
07:55
I don't even know what a medical record is.
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我甚至不知道醫療記錄是什麼
07:57
I want to solve a problem. I want an application.
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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 -- rearrange yourself,
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我把這些數據﹐你自己可以調整
08:02
put the symptoms in the left, the drugs across the top,
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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 and everyone else,
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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.
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哪些重複了
08:09
Years after he's had these drugs,
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在他用這些藥的多年以後
08:11
I learned that everything he did to manage his excess saliva,
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我終於知道他為了控制唾液
08:14
including some positive side effects that came from other drugs,
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和其他一些藥的副作用
08:17
were making his constipation worse.
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惡化了他的便秘問題
08:19
And if anyone's ever had severe constipation,
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如果有人曾經有過嚴重便秘
08:21
and you don't understand how much of an impact 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.
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這是一個雙關語
08:26
You're trying to manage these,
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你嘗試去理解這些
08:28
and this grid is available here,
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這個表格就在這裡
08:30
and we want to understand it.
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我們想要了解
08:33
No one's ever had this kind of information.
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在這之前從來沒有人擁有這些資料
08:36
So, patients have this. We're for patients.
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這是為了病患做的
08:38
This is all about patient health care, there was no doctors on our network.
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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.
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全是病患自己
08:42
So, how can we take this and bring them a tool
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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 the medical system?
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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 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 system,
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所使用﹐而且每個人
08:54
that everyone will understand?"
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都明白的﹖”
08:56
So, the patients print it out,
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於是病患把它印出來
08:58
because hospitals usually block us
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因為醫院拒絕我們
09:00
because they believe we are a social network.
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他們覺得我們只是網路社群
09:03
It's actually the most used feature on the website.
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這是網站上最多人使用的功能
09:05
Doctors actually love this sheet, and they're actually really engaged.
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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 of Steven
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於是我們從 Steven 的故事
09:11
and his history to data, 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 the medical care system.
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然後回到我們的醫療系統
09:15
And here's another paper.
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這是另外一種紙
09:17
This is a journal, PNAS --
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這是《國家科学院院刊》
09:19
I think it's the Proceedings of the National Academy of Science
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這是美國國家科學院裡的
09:21
of the United States of America.
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一項刊物
09:23
You've seen multiple of these today, when everyone's bragging 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 things they've done.
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他們做的了不起的事情
09:27
This is a report about a drug 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 used to treat bipolar disorder,
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鋰本來是用來治療躁鬱症的
09:33
that a group in Italy found
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意大利的一個團體發現
09:35
slowed ALS down in 16 patients, and published 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 the critiques of the paper.
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我們先不批評這個期刊
09:40
But the short story is: If you're a patient,
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簡單的說﹐如果你是病患
09:42
you want to be on the blue 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 line.
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你不想在紅線上﹐你想在藍線上
09:46
Because the blue 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, the blue 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 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 sites
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批評網路不負責任地廣告藥物
09:56
of promoting bad medicine and having people do things irresponsibly.
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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 when PNAS published 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 of the people in our system 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 of the patients started taking lithium based on 16 patients of data
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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.
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因為這個錯誤的報告
10:10
And they call the Internet irresponsible.
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他們卻說網路不負責任
10:12
Here's the implication of what happens.
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這就是事情發生的經過
10:14
There's this one guy, named Humberto, from Brazil,
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有個名叫 Humberto 的巴西人
10:17
who unfortunately passed away nine months 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 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 trial, it's going to be years.
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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 some tools, we let them track their blood levels.
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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 the data and exchange it.
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互相分享交換數據
10:32
You know, a data network.
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一個數據網
10:35
And they said, you know, "Jamie, PLM,
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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 this works 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 trial 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, you don't have data,
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你們沒有雙盲測試﹐沒有數據
10:45
it doesn't follow the scientific method.
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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."
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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)
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(笑聲)
10:55
I can't say whether lithium works in all ALS patients,
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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 it works in Humberto.
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但我知道它在 Humberto 身上是否管用
11:00
I bought a Mac about two years ago, I converted over,
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兩年前我把電腦換成蘋果
11:02
and I was so excited about this new feature 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 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 history of your computer,
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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, and I loved 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 a time machine for patients,
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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 of going backwards, we go forwards.
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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 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 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 like Humberto,
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於是我們聚集了所有病患資料
11:26
That's the Apple background, we stole 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 our own. This is a real app 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.
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不只是圖表
11:32
And you take those data, and we find the patients like him, and we bring
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把所有病患，像他的病患
11:34
their data together. And we bring their histories 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
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於是我們把他們放在一起
11:42
around the meaningful points,
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在那些有意義的數據點上
11:44
integrated across everything we know about the patient.
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綜合所有有關這個病患的訊息
11:46
Full information, the entire course of their disease.
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他們完整的病史
11:50
And that's what is going to happen to Humberto,
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這就是 Humberto 將要面對的病情
11:52
unless 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 almost every time.
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這幾乎百發百中
12:00
Now, the ones that it doesn't work are interesting.
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那些於別人不同的曲線圖很有趣
12:02
But almost all the time it works.
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但幾乎毫無例外
12:05
It's actually scary. It's beautiful.
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它準確地令我們害怕
12:07
So, we couldn't run a clinical trial, we couldn't figure 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 it was going to work for Humberto.
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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 in the audience will talk about power
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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 deviation. We'll do that later.
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和標準差﹐我們晚點會提到
12:16
But here is the answer
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但答案在這裡
12:20
of the mean of the patients that actually decided
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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 that started lithium.
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這些是全部使用鋰的病患
12:26
It's the Intent to Treat Curve.
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這是他們的治療曲線
12:28
You can see here, the blue dots on the top, the light ones,
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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 in PNAS
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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 are the ones,
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也是人們想要得到的結果
12:36
the pink ones on the bottom are the ones 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 in the middle are all of our patients
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中間的就是我們的病患
12:41
from the start of lithium at time zero,
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從開始服用鋰開始
12:43
going forward, and then going backward.
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繼續﹐然後繼續
12:47
So, you can see we matched them perfectly, perfectly.
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你可以看見這些數據完美的一致
12:50
Terrifyingly accurate matching.
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恐怖地相同
12:52
And going forward, you actually don't want to be a lithium patient 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 doing slightly worse -- not significantly,
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病情開始稍微惡化﹐雖然不是很嚴重
12:58
but slightly worse. You don't want to be a lithium patient 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 out,
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但許多人放棄繼續
13:04
the trial, there is too much drop out.
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做完這個實驗
13:06
Can we do the even harder thing? Can we go to the patients
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我們是否能找到那些
13:08
that actually decided to stay on lithium,
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繼續服用鋰的病人
13:12
because they were so convinced they were getting 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 algorithm,
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我們控制算法的結果是
13:16
are those 69 patients -- by the way, you'll notice
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這69個病人
13:18
that's four times the number of patients in the clinical trial --
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也就是接受臨床實驗的四倍
13:21
can we look at those patients and say,
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我們看這些病患﹐然後說
13:24
"Can we match 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 that are just like them,
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和其他的病患比較一下
13:29
and what happens?"
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看看會有什麼結果”
13:31
Even the ones that believed they were getting 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 the controls exactly. Exactly.
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事實上卻和一樣。
13:37
Those little lines? That's the power.
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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 dose
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我不能說如果你用更高劑量
13:43
or if you run the study proper -- 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 to detect that at about
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我們有統計效力可以測試
13:56
a quarter of the strengths reported in the initial study.
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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 trial funded by the NIH
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臨床實驗還要早一年開始
14:04
for millions of dollars failed for futility last week,
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上個禮拜他們公佈了他們的失敗
14:07
and announced it.
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.
14:10
So, remember I told you about my brother's stem cell transplant.
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記得我弟的幹細胞移植嗎
14:13
I never really knew whether it worked.
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我不知道那管不管用
14:16
And I put 100 million cells in his cisterna magna,
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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 out the IRBs 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.
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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 to him.
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我甚至不知道這樣會發生什麼
14:30
I actually asked Tim, who is the quant 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 searched for about a year to find someone
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我們找了一整年才找到
14:36
who could do the sort of math and statistics and modeling
336
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一個可以算這些統計﹐這些模型的人
14:38
in healthcare, couldn't find anybody. So, we went to the finance industry.
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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 the future
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這些人擅於預測未來的利率
14:43
of interest rates, and all that kind of stuff.
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那些所有的東西
14:45
And some of them were available. So, we hired one.
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某些人突然有空了﹐於是我們請了一個
14:48
(Laughter)
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(笑聲)
14:51
We hired them, set them up, assisting at lab.
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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 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.ed Tim. 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 can you tell me whether my brother's stem cell transplant
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“Tim 你可以告訴我﹐我弟的幹細胞移植
14:59
worked or not?"
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到底有沒有用? ”
15:02
And he sent 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 there. You see that guy that lived 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.
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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.
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他一定做了一些不同的事
15:12
But my brother didn't. My brother went straight 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 about 12 months.
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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 it. We'll try to get it better later
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我們第一次嘗試﹐我們會嘗試改進
15:21
but 12 months 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.
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我心裡很激動
15:30
You look at the patients, you can drill in all the controls,
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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 a woman that had --
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我找到一個女人
15:37
we found her, she was odd because she had data
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因為她的數據很奇怪
15:39
after she died.
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在死後還有數據
15:41
And her husband had come in and entered her last functional scores,
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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 how much she cared.
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因為他知道她很在乎
15:47
And I am thankful.
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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 after my brother had died,
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在我弟弟死後這麼多年
15:54
helped me answer the question about whether
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告訴我多年前我做的這個手術
15:56
an operation I did, and spent millions of dollars on
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這個花了幾百萬的手術
15:59
years ago, worked or not.
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究竟有沒有用
16:01
I wished it had been there
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我希望當時就有這個網站
16:03
when I'd done 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 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 that I founded
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因為在這個實驗室裡
16:12
has some data on a drug that might 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 it.
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我希望展示給你們看
16:18
I'd like to show it in real time, now,
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現在
16:20
and I want to do that for all of the diseases 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 experiment 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 journey 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 human again,
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找回我們的人性
16:36
to be part of community again,
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重新成為一個社群
16:39
to share of ourselves, to be vulnerable,
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分享我們自己的脆弱
16:41
and it's very exciting. So, thank you.
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這是很令人興奮的。謝謝大家。
16:44
(Applause)
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(掌聲)
ABOUT THE SPEAKER
Jamie Heywood - Healthcare revolutionaryWhen MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him.
Why you should listen
After finding out that his brother, Stephen, had the terminal illness ALS, Jamie Haywood founded the ALS Therapy Development Institute in 1999. ALS TDI is the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatments outside of academia and for-profit corporations. They were the first to publish research on the safety of using stem cells in ALS patients.
In 2005,Jamie and his youngest brother Ben, along with close friend Jeff Cole, built PatientsLikeMe.com to give patients control and access to their healthcare information and compare it to others like them. Its bold (and somewhat controversial) approach involves aggregating users health info in order to test the effects of particular treatments, bypassing clinical trials. It was named one of "15 companies that will change the world" by CNN Money.
Although his brother passed away in the fall of 2006, Jamie continues to serve as chairman of PatientsLikeMe and on the board of directors of ALS TDI. Jamie has raised over $50 million dollars for ALS TDI and was the subject of the biography His Brother’s Keeper, written by Jonathan Weiner. He was also featured in the documentary So Much So Fast, exploring the development of ALS TDI and the personal story of he and Stephen.
Jamie Heywood | Speaker | TED.com