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  • When my brother called me in December of 1998,

    譯者: Coco Shen 審譯者: Geoff Chen

  • 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

  • So, this is what happened when PNAS published this.

    讓人們做出錯誤決定的人也很有趣

  • Ten percent of the people in our system took lithium.

    當《國家科学院院刊》發表這篇文章以後

  • Ten percent of the patients started taking lithium based on 16 patients of data

    我們系統裡有一成的人開始使用鋰

  • in a bad publication.

    一成的病患因為16個病患的醫療結果開始使用鋰

  • And they call the Internet irresponsible.

    因為這個錯誤的報告

  • Here's the implication of what happens.

    他們卻說網路不負責任

  • There's this one guy, named Humberto, from Brazil,

    這就是事情發生的經過

  • who unfortunately passed away nine months ago,

    有個名叫 Humberto 的巴西人

  • who said, "Hey, listen. Can you help us answer this question?

    他在九個月前過世了

  • Because I don't want to wait for the next trial, it's going to be years.

    他說“聽著﹐你可以幫我們回答這個問題嗎﹖

  • I want to know now. Can you help us?"

    因為我不想等下次實驗結束﹐那還得等上多年