1.When my brother called me in December of 1998 he said the news does not look good.
1998年12月，我弟弟打电话告诉我， 他的病情不太好了。
2.This is him on the screen.
屏幕上这个人就是他。
3.He’d just been diagnosed with ALS, which is a disease that the average lifespan is three years.
他那时刚刚被诊断为肌萎缩性侧索硬化症。 患上这个病后，平均寿命仅剩三年。
4.It paralyzes you. It starts by killing the motor neurons in your spinal cord.
它通过杀死脊髓中的运动神经元， 致使病人瘫痪。
5.And you go from being a healthy, robust 29 year old male, to someone that cannot breathe, cannot move, cannot speak.
它使你从一个健康的、 强壮的29岁男人， 变成一个无法呼吸， 无法移动，无法说话的人。
6.This has actually been, to me, a gift, because we began a journey to learn a new way of thinking about life.
然而，这对于我来说，确是一个礼物， 因着它，我们开始了一段 重新认识生命的旅程。
7.And even though Steven passed away three years ago we had an amazing journey as a family.
尽管斯蒂夫三年前离开了， 我们还是作为一个家庭，共度了这个奇妙的旅程。
8.We did not even — I think adversity is not even the right word.
我们甚至没有—— 我想，“不幸”甚至都不适于用来形容这段经历。
9.We looked at this and we said we’re going to do something with this in an incredibly positive way.
我们审视着这个事实，而后决定， 我们要用一种惊人的积极来面对它。
10.And I want to talk today about one of the things that we decided to do, which was to think about a new way of approaching healthcare.
于是，我今天将要 说一说其中一件我们决定要做的事。 我们想探索一条医疗保健的新路。
11.Because, as we all know here today, it doesn’t work very well.
因为，正如我们所知， 现今的医疗方法并不尽如人意。
12.I want to talk about it in the context of a story.
下面，我将结合一个故事，讲讲我们所做的这件事。
13.This is the story of my brother.
这是关于我弟弟的故事。
14.But it’s just a story. And I want to go beyond the story, and go to something more.
但，我希望跨出这件事的范围， 触及更深远的东西。
15.”Given my status, what is the best outcome I can hope to achieve, and how do I get there?”
“鉴于我现在的状态，什么是我能期待达到的最好的结果， 我又如何去得到它？”
16.Is what we are here to do in medicine, is what everyone should do.
这句话是我们在这里针对医疗所做的探索，也是每个人应该做的思考。
17.And those questions all have variables to them.
每个人的问题和解答都不同
18.All of our statuses are different.
因为我们每个人的状况都不一样，
19.All of our hopes and dreams, what we want to accomplish, is different, and our paths will be different, they are all stories.
我们的期望和梦想不一样， 我们接近梦想的道路也不一样， 这些都可以写成不同的故事。
20.But it’s a story until we convert it to data and so what we do, this concept we had, was to take Steven’s status, “What is my status?”
是的，在我们把这转换为数据之前，这仅仅只是一个故事。 所以，我们提出的概念， 是列出斯蒂夫的状态——“我的状态是什么”，
21.and go from this concept of walking, breathing, and then his hands, speak, and ultimately happiness and function.
从走路，呼吸 到动手，说话 最后，是幸福感和功能性。
22.So, the first set of pathologies, they end up in the stick man on his icon, But the rest of them are really what’s important here.
这第一系里的病理组成了这个条状的人 的标志。 然而，在这里，其余的信息才是真正关键的东西。
23.Because Steven, despite the fact that he was paralyzed, as he was in that pool, he could not walk, he could not use his arms, that’s why he had the little floaty things on them.
因为，尽管斯蒂夫已经瘫痪， 你可以看到他在那个游泳池里，无法走动， 无法使用手臂，因此，你看到吗？
24.Did you see those?
他身上戴着那些小的浮力块。
25.He was happy. We were at the beach.
但他很幸福。当时我们在一个沙滩上，
26.He was raising his son. And he was productive.
他正举着他的儿子。并且他还具有很好的创造力。
27.And we took this, and we converted it into data.
于是我们提取这个信息，也将它转换成数据。
28.But it’s not a data point at that one moment in time.
但这并不是在一个时间点上的一个数据点。
29.It’s a data point of Steven in a context.
只是一个代表了斯蒂夫在一定生活环境下的数据。
30.Here he is in the pool. But here he is healthy, as a builder, taller, stronger, got all the women, amazing guy.
这个点，表示他在游泳池里。而这个点，表示他还是一个健康的建筑工人， 高大、强壮， 赢得所有女人的青睐，非常迷人。
31.Here he is walking down the isle, but he can barely walk now, so it’s impaired.
这个点表示他从小岛上走下来， 但他已经基本无法走路，所以已经是受损的。
32.And he could still hold his wife’s hand, but he couldn’t do buttons on his clothes, can’t feed himself.
他仍然可以牵着太太的手，但他无法自己扣扣子， 无法自己吃饭。
33.And here he is, paralyzed completely, unable to breathe and move, over this time journey.
而到这里，他已经完全瘫痪， 在这段时间里，他已经无法呼吸和移动。
34.These stories of his life, converted to data.
这样，我们将他的生命旅程转换为这些数据。
35.He renovated my carriage house when he was completely paralyzed, and unable to speak, and unable to breathe, and he won an award for a historic restoration.
他曾翻修过我的马厩， 当他完全瘫痪，无法说话、 无法呼吸之后，他赢得了一个保护历史建筑的奖励。
36.So, here is Steven alone, sharing this story in the world.
到此为止，这是斯蒂夫一个人在与全世界分享他的故事。
37.And this is the insight, the thing that we are excited about.
而这正是这件事的内在意义， 是我们为之感到激动的原因。
38.Because we have gone away from the community that we are, the fact that we really do love each other and want to care for each other.
因为我们已经从我们所在的社区走出来， 因为我们彼此相爱、我们希望照顾对方的缘故，
39.We need to give to others to be successful.
我们应该使得对方成功。
40.So, Steven is sharing this story, But he is not alone.
因此，斯蒂夫在分享他的故事， 但他并不是孤单的。
41.There are so many other people sharing their stories.
这里有许多其他的病人在分享他们的故事。
42.And not stories in words, but stories in data and words.
这些并不是仅仅用文字写成的故事，
43.And we convert that information into this structure, this understanding, this ability to convert those stories into something that is computable.
于是，我们将那些信息转换成这样的结构， 这样的理解方式，这样一种 能将那些故事转换成可计算形式的能力。
44.to which we can begin to change the way medicine is done and delivered.
借由此，我们就能开始 改变实现医疗的方式。
45.We did this for ALS. We can do this for depression, Parkinson’s disease, HIV.
我们不仅针对肌萎缩性侧索硬化症，我们还可以将此推广到抑郁症、 帕金森病、艾滋病上。
46.These are not simple, they are not internet scalable, they require thought and processes to find the meaningful information about the disease.
这样的推广并不容易，不只是用户的增加 而需要更多的考量和处理， 来找到关于这个疾病真正有用的信息。
47.So, this is what it looks like when you go to the website.
这个，就是你登陆这个网站将看到的。
48.And I’m going to show you what Patients Like Me, the company that myself, my youngest brother, and a good friend from MIT started.
现在我将展示由我和我最小的弟弟， 以及一个来自麻省理工的好朋友 共同创建的这个公司。
49.Here are the actual patients, there are 45,000 of them now, sharing their stories as data.
这些是真正的病人，现在总量达到了45,000人， 他们在这里用数据的形式分享他们的故事。
50.Here is an M.S. patient.
这是一位患有“多发性硬化症”的病人。
51.His name is Mike, and he is uniformly impaired on cognition, vision, walking, sensation.
他的名字叫迈克， 他的认知、视觉、行走以及感觉能力都受到了同等的损伤。
52.Those are things that are different for each M.S. patient.
不同的多发性硬化症病人，在这些方面的受损情况都不同，
53.Each of them can have a different characteristic.
他们每个人都具有不同的特质。
54.You can see fibromyalgia, HIV, ALS, depression.
你在这里可以看到纤维肌痛、艾滋病、肌萎缩性侧索硬化症以及抑郁症。
55.Look at this HIV patient down here, Zinny.
让我们一起来看看这位艾滋病患者，他叫基尼。
56.It’s two years of this disease. All of the symptoms are not there.
这是他患上艾滋病的第二年，还没有出现所有的症状，
57.But he is working to keep his CD4 count high and his viral level low so he can make his life better.
不过他在努力保持高水平的免疫细胞数量， 并降低病毒水平，获得较好的生活质量。
58.But you can aggregate this and you can discover things about treatments.
另一方面，我们可以综合这些信息，来发明更好的治疗方法。
59.Look at this, 2,000 people almost, on Copaxone.
从这里我们看到，有近2000个病人使用帕克松治疗多发性硬化症。
60.These are patients currently on drugs, sharing data.
这些是现在在用药的病人， 他们在分享有关的数据。
61.I love some of these, physical exercise, prayer.
我非常喜欢其中的一些内容，比如锻炼，比如祷告。
62.Anyone want to run a comparative effectiveness study on prayer against something? Let’s look at prayer.
有没有人想研究祷告的人和其他人相比，用药效果有什么区别？ 让我们一起来看看祷告的人。
63.What I love about this, just sort of interesting design problems.
我喜欢的是这其中有趣的设计思路。
64.These are why people pray.
这些是人们做祷告的原因，
65.Here is the schedule of how frequently they — It’s a dose.
这里是他们做祷告的频率和时间——也就是“剂量”。
66.So, anyone want to see the 32 patients that pray for 60 minutes a day, and see if they’re doing better, they probably are.
接下来，有人想知道这32位每天祷告60分钟的病人的病情是否比别人要好吗， 也许是的喔。
67.Here they are. Or, it’s an open network.
这就是结果。另一方面，这是一个开放的关系网，
68.Everybody is sharing. We can see it all.
每个人都在分享自己的数据，大家都可以看得见。
69.Or, I want to look at anxiety, because people are praying for anxiety.
或者，如果我想关注焦虑的情况，因为很多人因为焦虑而祷告，
70.And here is data on 15,000 people’s current anxiety, right now.
那么现在马上就可以看到15,000个病人现在的焦虑情况，
71.How they treat it, the drugs, the components of it, their side effects, all of it in a rich environment, and you can drill down and see the individuals.
以及他们是如何治疗焦虑的。 他们用的药，药的成分， 药的副作用，所有都可以显示在一个完整的环境下。 接下来，你可以继续追踪下去，去研究这些个体。
72.This amazing data allows us to drill down and see what this drug is for.
这些惊人的数据使得我们可以不断挖掘， 发现这个药物有什么作用。
73.1,500 people on this drug it think. Yes.
有1,500个人在用这个药，是的，
74.I want to talk to the 58 patients down here who are taking four milligrams a day.
我希望与其中58位病人交谈， 他们每天摄入4毫克这个药物。
75.And I want to talk to the ones of those that have been doing it for more than two years.
我还希望了解其中那些 用药两年以上的病人。
76.So, you can see the duration.
因为在这里我们还可以看到持续服药的时间。
77.All open, all available.
这所有数据都是开放的，随时可以获取。
78.I’m going to log in.
我现在登陆我的帐号。
79.And this is my brother’s profile.
这是我弟弟的资料。
80.And this is a new version of our platform we’re launching right now.
这是我们刚刚为这个平台开发的新版本，
81.This is the second generation. It’s going to be in Flash.
是第二代产品，加入了动画效果。
82.And you can see here, as this animates over, Steven’s actual data against the background of all other patients, against this information.
在动画结束之后，你可以看到， 所有病人数据的背景之上， 是斯蒂夫的数据。
83.The blue band is the 50th percentile. Steven is the 75th percentile, that he has non-genetic ALS.
这条蓝色带是50个百分点，而斯蒂夫是75个百分点， 并且他换的是非遗传性的肌萎缩性侧索硬化症。
84.You scroll down in this profile and you can see all of his prescription drugs, but more than that, in the new version, I can look at this interactively.
向下继续滚动，你可以在这个资料中看到 他的所有处方药记录。 不仅如此，在这个新的版本中，我还可以看到更互动的形式。
85.Wait, poor spinal capacity.
重量，受损的脊髓能力。
86.Doesn’t this remind you of a great stock program?
这有没有让你想起那些好用的股票软件？
87.Wouldn’t it be great if the technology we used to take care of ourselves was as good as the technology we use to make money?
如果我们用来关注健康的技术， 能和我们用来挣钱的技术一样好用，岂不是非常美妙？
88.Detrol. In the side effects for his drug, integrated into that, the stem cell transplant that he had, the first in the world, shared openly for anyone who wants to see it.
我们可以看到，托特罗定的副作用 结合他做过的干细胞移植， 这些信息首次向全世界想要了解它的人公开。
89.I love here, the cyberkinetics implant, which was, again, the only patients data that was online and available.
我还很喜欢这个，植入性人体应用前景， 这又是唯一一个在线、可用的病人数据。
90.You can adjust the time scale. You can adjust the symptoms.
你可以调整显示的时间范围，可以调整显示的症状。
91.You can look at the interaction between how I treat my ALS.
你还可以看到我治疗肌萎缩性侧索硬化症的各种手段的相互作用：
92.So, you click down on the ALS tab there.
比如你点击“肌萎缩性侧索硬化症”的标签，
93.I’m taking three drugs to manage it. Some of them are experimental.
我使用了三种药物来控制它，其中有一些是实验性的。
94.I can look at my constipation, how to manage it.
我还可以关注我的便秘问题，看看如何治疗。
95.I can see magnesium citrate. And the side effects from that drug all integrated in the time in which they’re meaningful.
我可以查看柠檬酸镁， 以及在有意义的时间范围内 所有副作用的效果。
96.But I want more.
然而，我还想要更多。
97.I don’t want to just look at this cool device. I want to take this data and make something even better.
我不想仅仅只是查看这些数据， 我希望能用这些数据去发明一些更好的应用。
98.I want my brother’s center of the universe and his symptoms and his drugs, and all of the things that interact among those, the side effects, to be in this beautiful data galaxy
我要使得我弟弟是宇宙的中心， 而他的所用症状、所有用药、 以及所有作用于其中的因素、 副作用，都成为漂亮的数据星系围绕在他周围。
99.that we can look at in any way we want to understand it.
我们可以用任何我们希望的方式去理解它。
100.So that we can take this information and go beyond just this simple model of what a record is.
这样，我们就可以利用这些信息， 超越数据记录 这个简单的模型。
101.I don’t even know what a medical record is.
我甚至不需要知道什么是医疗记录。
102.I want to solve a problem. I want an application.
我只要知道如何治疗疾病，我只需要知道如何应用这些数据。
103.So, can I take this data — rearrange yourself, put the symptoms in the left, the drugs across the top, tell me everything we know about Steven and everyone else,
因此，我可以重新整合这些数据， 把症状放在左边，药物列在上方， 告诉我关于斯蒂夫和其他所有人的信息，
104.and what interacts.
以及哪些因素在交互作用。
105.Years after he’s had these drugs, I learned that everything he did to manage his excess saliva, including some positive side effects that came from other drugs,
在他服用那些药物的几年之后， 我才知道他用来控制口水过量的所有方法， 包括其他一些曾起过积极副作用的药物，
106.were making his constipation worse.
都在同时恶化他的便秘问题。
107.And if anyone’s ever had severe constipation, and you don’t understand how much of an impact that has on your life, yes that was a pun.
所以，如果有人有过严重的便秘， 并且你不知道这会给你的生活带来什么样的影响， 是的，那是一个双关语。
108.You’re trying to manage these, And this grid is available here, and we want to understand it.
你正在努力去控制这些问题， 而这个表格就在这里， 我们希望去理解它。
109.No one has ever had this kind of information.
没有人有过这样的信息，
110.So, patients have this. We’re for patients.
而这里的病人们有，我们这样做就是为了这些病人。
111.This is all about patient health care. There was no doctors on our network.
这些都是关于病人的保健信息，我们的网络里没有医生。
112.This is about the patients.
这些全都是关乎于病人。
113.So, how can we take this and bring them a tool that they can go back and they can engage the medical system?
那么，我们如何利用这些来给他们创造一个工具， 让他们能够回到家里，自己参与到医疗系统中来呢？
114.And we worked hard, and we thought about it and we said, “What’s something that we can use all the time, that we can use in the medical care system,
我们为此努力工作，同时我们一直在思考， “有什么东西是我们可以可持续地利用， 应用在医疗系统中，
115.that everyone will understand?”
并且大家都能够理解？”
116.So, the patients print it out, because hospitals usually block us because they believe we are a social network.
这样，病人可以把它打印出来， 因为医院通常都屏蔽我们， 他们认为我们是一个社交网络。
117.It’s actually the most used feature on the website.
但这实际上是这个网站应用最多的功能。
118.Doctors actually love this sheet, and they’re actually really engaged.
医生们其实很喜欢这个数据单，它在实际应用中真的能派上用场。
119.So, we went from this story of Steven and his history to data, and then back to paper, where we went back and engaged the medical care system.
我们从网站上斯蒂夫的故事以及他的数据历史， 回到纸版信息， 结合进入传统的医疗系统。
120.And here is another paper.
这是另一种纸版信息。
121.This is a journal, PNAS.
这是一本杂志——PNAS。
122.I think is the Proceedings of the National Academy of Science of the United States of America.
这是美国国家科学院院刊 的缩写。
123.You’ve seen multiple of these today, when everyone was bragging about the amazing things they’ve done.
你已经看过很多类似的东西： 人们吹嘘他们完成了一件多么了不起的奇迹。
124.This is a report about a drug called lithium.
这篇文章报道了一种药，叫做锂。
125.Lithium, that is a drug used to treat bipolar disorder, that a group in Italy found slowed ALS down in 16 patients, and published it.
这个药物以前是用来治疗躁郁症的。 一个意大利研究小组发现， 这个药在16个病人中减缓了肌萎缩性侧索硬化症的发病，就发表了这篇文章。
126.Now, we’ll skip the critiques of the paper.
现在，我们跳过对这篇文章本身的评论，
127.But the short story is, if you’re a patient, you want to be on the blue line.
来关注一个小故事：如果你是一个病人， 你希望自己在这条蓝线上。
128.You don’t want to be on the red line, you want to be on the blue line.
你不希望自己在红线上，你希望自己在蓝线上。
129.Because the blue line is a better line. The red line is way downhill, the blue line is a good line.
因为蓝线表示更好的身体状况， 红线表示在走下坡路，而蓝线表示状况良好。
130.So, you know we said — we looked at this, and what I love also is that people always accuse these internet sites of promoting bad medicine and having people do things irresponsibly.
因此，你知道我在说什么——我们关注这些数据，我发现， 人们总是指责这些网站在促使他们使用不好的药物， 不负责任地指导病人做这做那。
131.So, this is what happened when PNAS published this.
这就是PNAS发表这篇文章之后所发生的故事。
132.10 percent of the people in our system took lithium.
我们系统中有百分之十的病人使用了“锂”，
133.10 percent of the patients started taking lithium based on 16 patients of data in a bad publication.
他们根据这篇烂文章中16个病人的数据， 就开始使用这种药物。
134.And they call the internet irresponsible.
他们控诉互联网的不负责任。
135.And here is the implication of what happens.
这暗示了接下来发生的状况。
136.And there is this one guy, named Humberto, from Brazil, who unfortunately passed away nine months ago, who said, “Hey listen. Can you help us answer this question?
这是其中的一个人，叫做汉伯特，来自巴西。 他很不幸地在九个月前去世了。 他说，“嘿听着，你们能帮我们解答这个问题吗？
137.Because I don’t want to wait for the next trial, it’s going to be years.
因为我不想等到下一轮试验，那要好多年后了，
138.I want to know now. Can you help us?”
我希望现在就知道结果。你能帮助我们吗？”
139.So, we launched some tools, we let them track their blood levels.
于是，我们就发明了一些工具，我们让他们跟踪记录他们到血压，
140.We let them share the data and exchange it.
并分享和交换数据。
141.You know, a data network.
你知道的，就是建立一个数据网络。
142.And they said, you know, “Jamie, PLM, can you guys tell us whether this works or not?”
而后，他们说，“吉米，PLM? 你们能不能告诉我们这个药到底有没有用？”
143.And we went around and we talked to people, and they said, “You can’t run a clinical trial like this. You know?
于是我们走访病人， 他们说，“你知道吗，你们无法建立临床试验，
144.You don’t have the blinding, you don’t have data, it doesn’t follow the scientific method.
你们没有双盲试验，你们没有数据， 这样做根本不是科学的方法。
145.It’s never going to work. You can’t do it.”
这样是没用的，你们无法做到。”
146.So, I said, “Okay well we can’t do that. Then we can do something harder.”
于是我说，“好吧，我们无法做到，那么我们就做更难的事。”
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