he said, "The news does not look good."

我弟在98年12月打電話給我

This is him on the screen.

他說﹐我有一個壞消息

He'd just been diagnosed with ALS,

這就是他

which is a disease that the average lifespan is three years.

他剛知道他得了肌肉萎縮性側索硬化症

It paralyzes you. It starts by killing

病患預期壽命是三年

the motor neurons in your spinal cord.

這疾病會讓你完全失去行為能力

And you go from being a healthy,

從殺死中樞神經中的運動神經元開始

robust 29-year-old male

你逐漸地從一個健康

to someone that cannot breathe,

強壯的29歲男性

cannot move, cannot speak.

變成一個無法呼吸

This has actually been, to me, a gift,

無法移動﹐言語的人

because we began a journey

我把這次經驗看作一項禮物

to learn a new way of thinking about life.

我們開始學習

And even though Steven passed away three years ago

用新的方法思考人生

we had an amazing journey as a family.

雖然 Steven 離開我們三年了

We did not even --

我們一起走過了一段神奇的旅途

I think adversity is not even the right word.

我們甚至沒有

We looked at this and we said, "We're going to do something with this

我甚至不覺得這是不幸的事件

in an incredibly positive way."

我們接受它﹐然後把它當成一次機會

And I want to talk today

用樂觀的態度面對

about one of the things that we decided to do,

我今天想對你們說的

which was to think about a new way of approaching healthcare.

便是我們決定要做的事情之一

Because, as we all know here today,

用一種嶄新的方式去思考醫療產業

it doesn't work very well.

在座的我們都知道

I want to talk about it in the context of a story.

現在的狀況並不是很理想

This is the story of my brother.

我希望用故事的方式和你們討論

But it's just a story. And I want to go beyond the story,

我弟弟的故事

and go to something more.

我希望在他的故事以後

"Given my status, what is the best outcome

我們能發現我們能做的事還有很多

I can hope to achieve, and how do I get there?"

“就我的疾病來說﹐什麼是最樂觀的情況

is what we are here to do in medicine, is what everyone should do.

我該怎麼做﹐才能達到那樣的情況﹖”

And those questions all have variables to them.

這便是醫療所該做的﹐每個人所該做的

All of our statuses are different.

每個人的問題和解答都不同

All of our hopes and dreams, what we want to accomplish,

因為每個人的狀況不同

is different, and our paths will be different,

我們想達到的希望和夢想

they are all stories.

都有所不同﹐我們的路徑也不同

But it's a story until we convert it to data

這些都是故事

and so what we do, this concept we had,

但除非我們把這些故事變成數據

was to take Steven's status, "What is my status?"

我們的概念是

and go from this concept of walking, breathing,

把 Steve 的病情 “我的病情是什麼﹖”

and then his hands, speak,

把這個概念延伸到走路﹐呼吸

and ultimately happiness and function.

手的移動﹐說話

So, the first set of pathologies, they end up in the stick man

以及心理的情緒和各種反應

on his icon,

第一組病狀﹐他們會組成圖片上的

but the rest of them are really what's important here.

這個人形

Because Steven, despite the fact that he was paralyzed,

但其他的資料才是重要的

as he was in that pool, he could not walk,

因為就算 Steven 已經癱瘓

he could not use his arms -- that's why he had the little floaty things on them,

他在泳池裡﹐他不能走動

did you see those? --

他不能移動手臂﹐所以才需要手臂上這些東西幫助他漂浮

he was happy. We were at the beach,

看到了嗎﹖

he was raising his son, and he was productive.

他很快樂﹐我們在沙灘上

And we took this, and we converted it into data.

他正舉起他的兒子﹐他還有反應

But it's not a data point at that one moment in time.

我們把這些資料都變成數據

It is a data point of Steven in a context.

這個數據不只是一個時間

Here he is in the pool. But here he is healthy,

而是過程裡的一個時間點

as a builder: taller, stronger,

這時他在游泳池裡﹐但這裡他還很健康

got all the women, amazing guy.

一個又高又壯的建築工人

Here he is walking down the aisle,

所有的女孩都喜歡他﹐了不起的男人

but he can barely walk now, so it's impaired.

然後他結婚

And he could still hold his wife's hand, but he couldn't do buttons on his clothes,

但他不太能走﹐有些顛簸

can't feed himself.

他還可以牽著他太太的手﹐但他無法自己扣上釦子

And here he is, paralyzed completely,

不能自己吃飯

unable to breathe and move, over this time journey.

到最後﹐他完全癱瘓了

These stories of his life, converted to data.

他不能呼吸﹐不能動

He renovated my carriage house

他人生旅程化為數據

when he was completely paralyzed, and unable to speak,

他整修了我的馬廄

and unable to breathe, and he won an award for a historic restoration.

當他完全癱瘓﹐不能說話

So, here's Steven alone, sharing this story in the world.

不能呼吸時﹐他贏得了歷史文物整修獎

And this is the insight, the thing that we are

這是他一個人的故事

excited about,

這就是這件事的意義﹐也是

because we have gone away from the community that we are,

我們興奮之處

the fact that we really do love each other and want to care for each other.

我們從社區走出來

We need to give to others to be successful.

把我們對彼此的愛和關懷

So, Steven is sharing this story,

把它分享給他人

but he is not alone.

Steven 分享了他的故事

There are so many other people sharing their stories.

但他並不孤單

Not stories in words, but stories in data and words.

有許多其他人正分享他們的故事

And we convert that information into this structure,

不只是語言﹐這些故事也由數據寫成

this understanding, this ability to convert

我們把這些資料放進這個程式

those stories into something that is computable,

把這些理解從故事

to which we can begin to change the way

化為可計算的數據

medicine is done and delivered.

從這裡開始﹐我們可以改變

We did this for ALS. We can do this for depression,

我們現有的健康醫療

Parkinson's disease, HIV.

從肌肉萎縮性側索硬化症﹐憂鬱症

These are not simple, they are not internet scalable;

帕金斯症﹐愛滋病都可以用一樣的方法

they require thought and processes

這並不容易﹐不只是用戶的增加

to find the meaningful information about the disease.

還有更多考量和過程

So, this is what it looks like when you go to the website.

才能把這些疾病資料變成有意義的資訊

And I'm going to show you what Patients Like Me,

這是你進入網站時的畫面

the company that myself, my youngest brother

這個網站叫“病患如我”

and a good friend from MIT started.

是由我﹐我小弟

Here are the actual patients, there are 45,000 of them now,

和一個麻省理工的朋友一起創立的

sharing their stories as data.

現在有大約四萬五千個病患

Here is an M.S. patient.

和我們分享他們的故事和數據

His name is Mike, and he is uniformly impaired

這裡有個多發性硬化症病患

on cognition, vision, walking, sensation.

他叫麥克﹐他的認知﹐視覺

Those are things that are different for each M.S. patient.

行走﹐感知都受損了

Each of them can have a different characteristic.

每個多發性硬化症病患都不太一樣

You can see fibromyalgia, HIV, ALS, depression.

每個人的病徵都不同

Look at this HIV patient down here, Zinny.

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

It's two years of this disease. All of the symptoms are not there.

這裡有個叫金尼的愛滋病患

But he is working to keep his CD4 count high

他已經得愛滋兩年了﹐還沒有出現任何病徵

and his viral level low so he can make his life better.

他正努力保持高免疫細胞

But you can aggregate this and you can discover things about treatments.

和病毒數量低﹐讓他能夠過得更好

Look at this, 2,000 people almost, on Copaxone.

綜合這些數據﹐就能發現不同治療所造成的差別

These are patients currently on drugs,

這裡有兩千多個正在使用格拉默的病患

sharing data.

這些正在用藥的病人一起

I love some of these, physical exercise, prayer.

分享數據

Anyone want to run a comparative effectiveness study

有些很棒﹐運動﹐禱告

on prayer against something? Let's look at prayer.

有人想要做禱告和其他治療法的比較研究嗎﹖

What I love about this, just sort of interesting design problems.

讓我們看看禱告

These are why people pray.

我最喜歡的是這些有趣的設計問題

Here is the schedule of how frequently they -- it's a dose.

這是人們禱告的原因

So, anyone want to see the 32 patients that pray for 60 minutes a day,

這是他們禱告的頻率﹐像個劑量

and see if they're doing better, they probably are.

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

Here they are. It's an open network,

療癒程度是不是比較好﹐答案是“是的”

everybody is sharing. We can see it all.

你可以看到﹐這些都是開放的

Or, I want to look at anxiety, because people are praying for anxiety.

我們可以看到每個人分享的資訊

And here is data on 15,000 people's current anxiety, right now.

如果我想看焦慮症﹐人們為了焦慮而禱告

How they treat it,

這裡有一萬五千個焦慮患者的數據

the drugs, the components of it,

他們如何治療

their side effects, all of it in a rich environment,

他們用的藥物﹐裡面的成份

and you can drill down and see the individuals.

副作用﹐這裡有豐富的資料

This amazing data allows us to drill down and see

你可以繼續深入研究各個病患

what this drug is for --

這些驚人的數據讓我們深入了解

1,500 people on this drug, I think. Yes.

這些藥物的作用

I want to talk to the 58 patients down here

一千五百個病患正在使用這個藥

who are taking four milligrams a day.

讓我看看這58個病患

And I want to talk to the ones of those that have been doing

他們每天吃四毫克

it for more than two years.

我想和他們對話﹐看看他們用了兩年以後

So, you can see the duration.

現在的狀況如何

All open, all available.

你可以看見他們的療程

I'm going to log in.

一切資料都是開放的

And this is my brother's profile.

我現在要登錄

And this is a new version of our platform we're launching right now.

這是我弟弟的檔案

This is the second generation. It's going to be in Flash.

這是我們最近開放的新版平臺

And you can see here, as this animates over,

第二代﹐用 Flash 播放器

Steven's actual data against the background of all other patients,

你可以看到﹐當它移動的時候

against this information.

Steven 的數據和其他病患的數據

The blue band is the 50th percentile. Steven is the 75th percentile,

相互比較

that he has non-genetic ALS.

藍色帶是五十個百分點﹐Steven 是七十五

You scroll down in this profile and you can see

他患的是非遺傳性的肌肉萎縮性側索硬化症

all of his prescription drugs,

這個檔案下面

but more than that, in the new version, I can look at this interactively.

有他所有處方藥的記錄

Wait, poor spinal capacity.

不只這樣﹐新版本裡可以互動

Doesn't this remind you of a great stock program?

受損的脊椎功能

Wouldn't it be great if the technology we used to take care of ourselves

這是否令你想起那些很好的股票軟體﹖

was as good as the technology we use to make money?

如果我們能把這些拿來賺錢的科技拿來照顧健康

Detrol. In the side effects for his drug,

那不是很好嗎﹖

integrated into that, the stem cell transplant that he had,

托特羅定﹐這裡有藥物的副作用

the first in the world, shared openly for anyone who wants to see it.

結合幹細胞移植

I love here -- the cyberkinetics implant,

全世界第一個公開的資料站

which was, again, the only patient's data that was online and available.

我喜歡這個﹐植入性芯片

You can adjust the time scale. You can adjust the symptoms.

這也是網路上唯一公開的病患數據

You can look at the interaction between how I treat my ALS.

你可以調整時間軸﹐症狀

So, you click down on the ALS tab there.

我如何醫治我的肌肉萎縮性側索硬化症

I'm taking three drugs to manage it. Some of them are experimental.

點下面的肌肉萎縮性側索硬化症標籤

I can look at my constipation, how to manage it.

我吃三種藥﹐一些還在實驗階段

I can see magnesium citrate, and the side effects

我該怎麼解決我的便秘問題

from that drug all integrated in the time

檸檬酸鎂和它的副作用

in which they're meaningful.

在它的有效期之內

But I want more.

它做了什麼

I don't want to just look at this cool device, I want to take this

我還想要更多

data and make something even better.

我不想只是看看這些功能

I want my brother's center of the universe and his symptoms

我希望能用這些數據改善現狀

and his drugs,

我要我弟弟的狀況﹐病症

and all of the things that interact among those,

他的用藥

the side effects, to be in this beautiful data galaxy

副作用﹐所有這些資訊

that we can look at in any way we want to understand it,

放進這個美麗的數據銀河

so that we can take this information

就可以用它來做很多研究

and go beyond just this simple model

我們可以利用這些資料

of what a record is.

超越過去的記錄模式

I don't even know what a medical record is.

.

I want to solve a problem. I want an application.

我甚至不知道醫療記錄是什麼

So, can I take this data -- rearrange yourself,

我祇想解決問題﹐我想要一個應用程式

put the symptoms in the left, the drugs across the top,

我把這些數據﹐你自己可以調整

tell me everything we know about Steven and everyone else,

把症狀放在左邊﹐藥物放上面

and what interacts.

這可以告訴我們有關 Steven 和所有人的資料

Years after he's had these drugs,

哪些重複了

I learned that everything he did to manage his excess saliva,

在他用這些藥的多年以後

including some positive side effects that came from other drugs,

我終於知道他為了控制唾液

were making his constipation worse.

和其他一些藥的副作用

And if anyone's ever had severe constipation,

惡化了他的便秘問題

and you don't understand how much of an impact that has on your life --

如果有人曾經有過嚴重便秘

yes, that was a pun.

你不了解這對你生活的影響有多大

You're trying to manage these,

這是一個雙關語

and this grid is available here,

你嘗試去理解這些

and we want to understand it.

這個表格就在這裡

No one's ever had this kind of information.

我們想要了解

So, patients have this. We're for patients.

在這之前從來沒有人擁有這些資料

This is all about patient health care, there was no doctors on our network.

這是為了病患做的

This is about the patients.

病患分享他們的醫療經驗﹐這裡沒有駐站醫生

So, how can we take this and bring them a tool

全是病患自己

that they can go back and they can engage the medical system?

我們該如何使用這些資料

And we worked hard, and we thought about it and we said,

讓病患可以把這些資料帶回他們所使用的醫療系統﹖

"What's something we can use all the time,

我們努力的思考﹐我們想

that we can use in the medical care system,

“什麼是我們現在的醫療系統中

that everyone will understand?"

所使用﹐而且每個人

So, the patients print it out,

都明白的﹖”

because hospitals usually block us

於是病患把它印出來

because they believe we are a social network.

因為醫院拒絕我們

It's actually the most used feature on the website.

他們覺得我們只是網路社群

Doctors actually love this sheet, and they're actually really engaged.

這是網站上最多人使用的功能

So, we went from this story of Steven

醫生們喜歡這個資料﹐他們非常投入

and his history to data, and then back to paper,

於是我們從 Steven 的故事

where we went back and engaged the medical care system.

把故事化為數據﹐然後回到紙上

And here's another paper.

然後回到我們的醫療系統

This is a journal, PNAS --

這是另外一種紙

I think it's the Proceedings of the National Academy of Science

這是《國家科学院院刊》

of the United States of America.

這是美國國家科學院裡的

You've seen multiple of these today, when everyone's bragging about

一項刊物

the amazing things they've done.

你今天已經看到它幾次了﹐每個人都在吹噓

This is a report about a drug called lithium.

他們做的了不起的事情

Lithium, that is a drug used to treat bipolar disorder,

這裡有個關於鋰這個藥物的報告

that a group in Italy found

鋰本來是用來治療躁鬱症的

slowed ALS down in 16 patients, and published it.

意大利的一個團體發現

Now, we'll skip the critiques of the paper.

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

But the short story is: If you're a patient,

我們先不批評這個期刊

you want to be on the blue line.

簡單的說﹐如果你是病患

You don't want to be on the red line, you want to be on the blue line.

你想在藍線上

Because the blue line is a better line. The red line

你不想在紅線上﹐你想在藍線上

is way downhill, the blue line is a good line.

因為藍線比較好﹐紅線

So, you know we said -- we looked at this, and what I love also

在下面﹐藍線是好的

is that people always accuse these Internet sites

我們看著這個﹐我覺得那些

of promoting bad medicine and having people do things irresponsibly.

批評網路不負責任地廣告藥物