Jamie Heywood: The big idea my brother inspired

45,802 views ・ 2010-02-02

TED


请双击下面的英文字幕来播放视频。

翻译人员: Zhihua Dong 校对人员: Jenny Yang
00:15
When my brother called me in December of 1998,
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1998年12月,我弟弟打电话告诉我,
00:18
he said, "The news does not look good."
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他的病情不太好了。
00:20
This is him on the screen.
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屏幕上这个人就是他。
00:22
He'd just been diagnosed with ALS,
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他那时刚刚被诊断为肌萎缩性侧索硬化症。
00:24
which is a disease that the average lifespan is three years.
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患上这个病后,平均寿命仅剩三年。
00:28
It paralyzes you. It starts by killing
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它通过杀死脊髓中的运动神经元,
00:30
the motor neurons in your spinal cord.
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致使病人瘫痪。
00:33
And you go from being a healthy,
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它使你从一个健康的、
00:35
robust 29-year-old male
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强壮的29岁男人,
00:38
to someone that cannot breathe,
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变成一个无法呼吸,
00:40
cannot move, cannot speak.
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无法移动,无法说话的人。
00:46
This has actually been, to me, a gift,
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然而,这对于我来说,确是一个礼物,
00:50
because we began a journey
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因着它,我们开始了一段
00:53
to learn a new way of thinking about life.
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重新认识生命的旅程。
00:56
And even though Steven passed away three years ago
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尽管斯蒂夫三年前离开了,
01:00
we had an amazing journey as a family.
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我们还是作为一个家庭,共度了这个奇妙的旅程。
01:02
We did not even --
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我们甚至没有——
01:05
I think adversity is not even the right word.
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我想,“不幸”甚至都不适于用来形容这段经历。
01:07
We looked at this and we said, "We're going to do something with this
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我们审视着这个事实,而后决定,
01:10
in an incredibly positive way."
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我们要用一种惊人的积极来面对它。
01:12
And I want to talk today
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于是,我今天将要
01:14
about one of the things that we decided to do,
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说一说其中一件我们决定要做的事。
01:17
which was to think about a new way of approaching healthcare.
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我们想探索一条医疗保健的新路。
01:21
Because, as we all know here today,
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因为,正如我们所知,
01:23
it doesn't work very well.
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现今的医疗方法并不尽如人意。
01:25
I want to talk about it in the context of a story.
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下面,我将结合一个故事,讲讲我们所做的这件事。
01:28
This is the story of my brother.
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这是关于我弟弟的故事。
01:30
But it's just a story. And I want to go beyond the story,
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但,我希望跨出这件事的范围,
01:33
and go to something more.
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触及更深远的东西。
01:35
"Given my status, what is the best outcome
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“鉴于我现在的状态,什么是我能期待达到的最好的结果,
01:38
I can hope to achieve, and how do I get there?"
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我又如何去得到它?”
01:41
is what we are here to do in medicine, is what everyone should do.
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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。
01:44
And those questions all have variables to them.
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每个人的问题和解答都不同
01:46
All of our statuses are different.
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因为我们每个人的状况都不一样,
01:48
All of our hopes and dreams, what we want to accomplish,
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我们的期望和梦想不一样,
01:50
is different, and our paths will be different,
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我们接近梦想的道路也不一样,
01:52
they are all stories.
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这些都可以写成不同的故事。
01:54
But it's a story until we convert it to data
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是的,在我们把这转换为数据之前,这仅仅只是一个故事。
01:56
and so what we do, this concept we had,
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所以,我们提出的概念,
01:58
was to take Steven's status, "What is my status?"
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是列出斯蒂夫的状态——“我的状态是什么”,
02:01
and go from this concept of walking, breathing,
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从走路,呼吸
02:06
and then his hands, speak,
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到动手,说话
02:09
and ultimately happiness and function.
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最后,是幸福感和功能性。
02:13
So, the first set of pathologies, they end up in the stick man
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这第一系里的病理组成了这个条状的人
02:15
on his icon,
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的标志。
02:17
but the rest of them are really what's important here.
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然而,在这里,其余的信息才是真正关键的东西。
02:20
Because Steven, despite the fact that he was paralyzed,
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因为,尽管斯蒂夫已经瘫痪,
02:23
as he was in that pool, he could not walk,
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你可以看到他在那个游泳池里,无法走动,
02:26
he could not use his arms -- that's why he had the little floaty things on them,
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无法使用手臂,因此,你看到吗?
02:28
did you see those? --
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他身上戴着那些小的浮力块。
02:30
he was happy. We were at the beach,
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但他很幸福。当时我们在一个沙滩上,
02:32
he was raising his son, and he was productive.
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他正举着他的儿子。并且他还具有很好的创造力。
02:34
And we took this, and we converted it into data.
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于是我们提取这个信息,也将它转换成数据。
02:39
But it's not a data point at that one moment in time.
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但这并不是在一个时间点上的一个数据点。
02:41
It is a data point of Steven in a context.
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只是一个代表了斯蒂夫在一定生活环境下的数据。
02:43
Here he is in the pool. But here he is healthy,
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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,
02:45
as a builder: taller, stronger,
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高大、强壮,
02:48
got all the women, amazing guy.
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赢得所有女人的青睐,非常迷人。
02:50
Here he is walking down the aisle,
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这个点表示他从小岛上走下来,
02:52
but he can barely walk now, so it's impaired.
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但他已经基本无法走路,所以已经是受损的。
02:55
And he could still hold his wife's hand, but he couldn't do buttons on his clothes,
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他仍然可以牵着太太的手,但他无法自己扣扣子,
02:57
can't feed himself.
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无法自己吃饭。
02:59
And here he is, paralyzed completely,
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而到这里,他已经完全瘫痪,
03:01
unable to breathe and move, over this time journey.
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在这段时间里,他已经无法呼吸和移动。
03:03
These stories of his life, converted to data.
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这样,我们将他的生命旅程转换为这些数据。
03:06
He renovated my carriage house
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他曾翻修过我的马厩,
03:08
when he was completely paralyzed, and unable to speak,
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当他完全瘫痪,无法说话、
03:10
and unable to breathe, and he won an award for a historic restoration.
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无法呼吸之后,他赢得了一个保护历史建筑的奖励。
03:16
So, here's Steven alone, sharing this story in the world.
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到此为止,这是斯蒂夫一个人在与全世界分享他的故事。
03:18
And this is the insight, the thing that we are
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而这正是这件事的内在意义,
03:21
excited about,
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是我们为之感到激动的原因。
03:23
because we have gone away from the community that we are,
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因为我们已经从我们所在的社区走出来,
03:26
the fact that we really do love each other and want to care for each other.
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因为我们彼此相爱、我们希望照顾对方的缘故,
03:29
We need to give to others to be successful.
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我们应该使得对方成功。
03:31
So, Steven is sharing this story,
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因此,斯蒂夫在分享他的故事,
03:34
but he is not alone.
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但他并不是孤单的。
03:36
There are so many other people sharing their stories.
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这里有许多其他的病人在分享他们的故事。
03:38
Not stories in words, but stories in data and words.
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这些并不是仅仅用文字写成的故事,
03:41
And we convert that information into this structure,
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于是,我们将那些信息转换成这样的结构,
03:44
this understanding, this ability to convert
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这样的理解方式,这样一种
03:47
those stories into something that is computable,
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能将那些故事转换成可计算形式的能力。
03:49
to which we can begin to change the way
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借由此,我们就能开始
03:51
medicine is done and delivered.
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改变实现医疗的方式。
03:53
We did this for ALS. We can do this for depression,
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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、
03:55
Parkinson's disease, HIV.
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帕金森病、艾滋病上。
03:57
These are not simple, they are not internet scalable;
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这样的推广并不容易,不只是用户的增加
03:59
they require thought and processes
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而需要更多的考量和处理,
04:01
to find the meaningful information about the disease.
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来找到关于这个疾病真正有用的信息。
04:04
So, this is what it looks like when you go to the website.
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这个,就是你登陆这个网站将看到的。
04:07
And I'm going to show you what Patients Like Me,
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现在我将展示由我和我最小的弟弟,
04:10
the company that myself, my youngest brother
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以及一个来自麻省理工的好朋友
04:12
and a good friend from MIT started.
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共同创建的这个公司。
04:14
Here are the actual patients, there are 45,000 of them now,
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这些是真正的病人,现在总量达到了45,000人,
04:17
sharing their stories as data.
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他们在这里用数据的形式分享他们的故事。
04:19
Here is an M.S. patient.
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这是一位患有“多发性硬化症”的病人。
04:21
His name is Mike, and he is uniformly impaired
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他的名字叫迈克,
04:23
on cognition, vision, walking, sensation.
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他的认知、视觉、行走以及感觉能力都受到了同等的损伤。
04:26
Those are things that are different for each M.S. patient.
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不同的多发性硬化症病人,在这些方面的受损情况都不同,
04:28
Each of them can have a different characteristic.
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他们每个人都具有不同的特质。
04:30
You can see fibromyalgia, HIV, ALS, depression.
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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。
04:35
Look at this HIV patient down here, Zinny.
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让我们一起来看看这位艾滋病患者,他叫基尼。
04:38
It's two years of this disease. All of the symptoms are not there.
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这是他患上艾滋病的第二年,还没有出现所有的症状,
04:41
But he is working to keep his CD4 count high
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不过他在努力保持高水平的免疫细胞数量,
04:43
and his viral level low so he can make his life better.
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并降低病毒水平,获得较好的生活质量。
04:46
But you can aggregate this and you can discover things about treatments.
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另一方面,我们可以综合这些信息,来发明更好的治疗方法。
04:50
Look at this, 2,000 people almost, on Copaxone.
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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。
04:52
These are patients currently on drugs,
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这些是现在在用药的病人,
04:54
sharing data.
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他们在分享有关的数据。
04:56
I love some of these, physical exercise, prayer.
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我非常喜欢其中的一些内容,比如锻炼,比如祷告。
04:59
Anyone want to run a comparative effectiveness study
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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?
05:01
on prayer against something? Let's look at prayer.
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让我们一起来看看祷告的人。
05:03
What I love about this, just sort of interesting design problems.
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我喜欢的是这其中有趣的设计思路。
05:07
These are why people pray.
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这些是人们做祷告的原因,
05:09
Here is the schedule of how frequently they -- it's a dose.
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这里是他们做祷告的频率和时间——也就是“剂量”。
05:11
So, anyone want to see the 32 patients that pray for 60 minutes a day,
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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,
05:14
and see if they're doing better, they probably are.
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也许是的喔。
05:16
Here they are. It's an open network,
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这就是结果。另一方面,这是一个开放的关系网,
05:19
everybody is sharing. We can see it all.
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每个人都在分享自己的数据,大家都可以看得见。
05:22
Or, I want to look at anxiety, because people are praying for anxiety.
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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,
05:25
And here is data on 15,000 people's current anxiety, right now.
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那么现在马上就可以看到15,000个病人现在的焦虑情况,
05:30
How they treat it,
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以及他们是如何治疗焦虑的。
05:33
the drugs, the components of it,
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他们用的药,药的成分,
05:36
their side effects, all of it in a rich environment,
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药的副作用,所有都可以显示在一个完整的环境下。
05:39
and you can drill down and see the individuals.
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接下来,你可以继续追踪下去,去研究这些个体。
05:41
This amazing data allows us to drill down and see
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这些惊人的数据使得我们可以不断挖掘,
05:44
what this drug is for --
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发现这个药物有什么作用。
05:47
1,500 people on this drug, I think. Yes.
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有1,500个人在用这个药,是的,
05:49
I want to talk to the 58 patients down here
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我希望与其中58位病人交谈,
05:51
who are taking four milligrams a day.
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他们每天摄入4毫克这个药物。
05:53
And I want to talk to the ones of those that have been doing
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我还希望了解其中那些
05:55
it for more than two years.
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用药两年以上的病人。
06:01
So, you can see the duration.
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因为在这里我们还可以看到持续服药的时间。
06:03
All open, all available.
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这所有数据都是开放的,随时可以获取。
06:07
I'm going to log in.
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我现在登陆我的帐号。
06:11
And this is my brother's profile.
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这是我弟弟的资料。
06:13
And this is a new version of our platform we're launching right now.
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这是我们刚刚为这个平台开发的新版本,
06:17
This is the second generation. It's going to be in Flash.
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是第二代产品,加入了动画效果。
06:19
And you can see here, as this animates over,
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在动画结束之后,你可以看到,
06:22
Steven's actual data against the background of all other patients,
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所有病人数据的背景之上,
06:25
against this information.
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是斯蒂夫的数据。
06:28
The blue band is the 50th percentile. Steven is the 75th percentile,
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这条蓝色带是50个百分点,而斯蒂夫是75个百分点,
06:30
that he has non-genetic ALS.
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并且他换的是非遗传性的肌萎缩性侧索硬化症。
06:33
You scroll down in this profile and you can see
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向下继续滚动,你可以在这个资料中看到
06:35
all of his prescription drugs,
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他的所有处方药记录。
06:37
but more than that, in the new version, I can look at this interactively.
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不仅如此,在这个新的版本中,我还可以看到更互动的形式。
06:40
Wait, poor spinal capacity.
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重量,受损的脊髓能力。
06:42
Doesn't this remind you of a great stock program?
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这有没有让你想起那些好用的股票软件?
06:44
Wouldn't it be great if the technology we used to take care of ourselves
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如果我们用来关注健康的技术,
06:46
was as good as the technology we use to make money?
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能和我们用来挣钱的技术一样好用,岂不是非常美妙?
06:49
Detrol. In the side effects for his drug,
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我们可以看到,托特罗定的副作用
06:51
integrated into that, the stem cell transplant that he had,
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结合他做过的干细胞移植,
06:53
the first in the world, shared openly for anyone who wants to see it.
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这些信息首次向全世界想要了解它的人公开。
06:59
I love here -- the cyberkinetics implant,
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我还很喜欢这个,植入性人体应用前景,
07:01
which was, again, the only patient's data that was online and available.
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这又是唯一一个在线、可用的病人数据。
07:05
You can adjust the time scale. You can adjust the symptoms.
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你可以调整显示的时间范围,可以调整显示的症状。
07:07
You can look at the interaction between how I treat my ALS.
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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:
07:11
So, you click down on the ALS tab there.
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比如你点击“肌萎缩性侧索硬化症”的标签,
07:13
I'm taking three drugs to manage it. Some of them are experimental.
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我使用了三种药物来控制它,其中有一些是实验性的。
07:16
I can look at my constipation, how to manage it.
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我还可以关注我的便秘问题,看看如何治疗。
07:18
I can see magnesium citrate, and the side effects
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我可以查看柠檬酸镁,
07:20
from that drug all integrated in the time
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以及在有意义的时间范围内
07:22
in which they're meaningful.
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所有副作用的效果。
07:25
But I want more.
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然而,我还想要更多。
07:27
I don't want to just look at this cool device, I want to take this
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我不想仅仅只是查看这些数据,
07:29
data and make something even better.
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我希望能用这些数据去发明一些更好的应用。
07:31
I want my brother's center of the universe and his symptoms
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我要使得我弟弟是宇宙的中心,
07:34
and his drugs,
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而他的所用症状、所有用药、
07:37
and all of the things that interact among those,
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以及所有作用于其中的因素、
07:39
the side effects, to be in this beautiful data galaxy
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副作用,都成为漂亮的数据星系围绕在他周围。
07:42
that we can look at in any way we want to understand it,
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我们可以用任何我们希望的方式去理解它。
07:45
so that we can take this information
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这样,我们就可以利用这些信息,
07:48
and go beyond just this simple model
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超越数据记录
07:52
of what a record is.
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这个简单的模型。
07:55
I don't even know what a medical record is.
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我甚至不需要知道什么是医疗记录。
07:57
I want to solve a problem. I want an application.
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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。
07:59
So, can I take this data -- rearrange yourself,
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因此,我可以重新整合这些数据,
08:02
put the symptoms in the left, the drugs across the top,
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把症状放在左边,药物列在上方,
08:04
tell me everything we know about Steven and everyone else,
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告诉我关于斯蒂夫和其他所有人的信息,
08:06
and what interacts.
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以及哪些因素在交互作用。
08:09
Years after he's had these drugs,
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在他服用那些药物的几年之后,
08:11
I learned that everything he did to manage his excess saliva,
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我才知道他用来控制口水过量的所有方法,
08:14
including some positive side effects that came from other drugs,
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包括其他一些曾起过积极副作用的药物,
08:17
were making his constipation worse.
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都在同时恶化他的便秘问题。
08:19
And if anyone's ever had severe constipation,
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所以,如果有人有过严重的便秘,
08:21
and you don't understand how much of an impact that has on your life --
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并且你不知道这会给你的生活带来什么样的影响,
08:23
yes, that was a pun.
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是的,那是一个双关语。
08:26
You're trying to manage these,
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你正在努力去控制这些问题,
08:28
and this grid is available here,
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而这个表格就在这里,
08:30
and we want to understand it.
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我们希望去理解它。
08:33
No one's ever had this kind of information.
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没有人有过这样的信息,
08:36
So, patients have this. We're for patients.
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而这里的病人们有,我们这样做就是为了这些病人。
08:38
This is all about patient health care, there was no doctors on our network.
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这些都是关于病人的保健信息,我们的网络里没有医生。
08:40
This is about the patients.
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这些全都是关乎于病人。
08:42
So, how can we take this and bring them a tool
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那么,我们如何利用这些来给他们创造一个工具,
08:45
that they can go back and they can engage the medical system?
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让他们能够回到家里,自己参与到医疗系统中来呢?
08:47
And we worked hard, and we thought about it and we said,
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我们为此努力工作,同时我们一直在思考,
08:50
"What's something we can use all the time,
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“有什么东西是我们可以可持续地利用,
08:52
that we can use in the medical care system,
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应用在医疗系统中,
08:54
that everyone will understand?"
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并且大家都能够理解?”
08:56
So, the patients print it out,
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这样,病人可以把它打印出来,
08:58
because hospitals usually block us
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因为医院通常都屏蔽我们,
09:00
because they believe we are a social network.
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他们认为我们是一个社交网络。
09:03
It's actually the most used feature on the website.
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但这实际上是这个网站应用最多的功能。
09:05
Doctors actually love this sheet, and they're actually really engaged.
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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。
09:08
So, we went from this story of Steven
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我们从网站上斯蒂夫的故事以及他的数据历史,
09:11
and his history to data, and then back to paper,
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回到纸版信息,
09:14
where we went back and engaged the medical care system.
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结合进入传统的医疗系统。
09:15
And here's another paper.
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这是另一种纸版信息。
09:17
This is a journal, PNAS --
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这是一本杂志——PNAS。
09:19
I think it's the Proceedings of the National Academy of Science
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这是美国国家科学院院刊
09:21
of the United States of America.
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的缩写。
09:23
You've seen multiple of these today, when everyone's bragging about
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你已经看过很多类似的东西:
09:25
the amazing things they've done.
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人们吹嘘他们完成了一件多么了不起的奇迹。
09:27
This is a report about a drug called lithium.
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这篇文章报道了一种药,叫做锂。
09:29
Lithium, that is a drug used to treat bipolar disorder,
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这个药物以前是用来治疗躁郁症的。
09:33
that a group in Italy found
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一个意大利研究小组发现,
09:35
slowed ALS down in 16 patients, and published it.
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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。
09:38
Now, we'll skip the critiques of the paper.
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现在,我们跳过对这篇文章本身的评论,
09:40
But the short story is: If you're a patient,
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来关注一个小故事:如果你是一个病人,
09:42
you want to be on the blue line.
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你希望自己在这条蓝线上。
09:44
You don't want to be on the red line, you want to be on the blue line.
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你不希望自己在红线上,你希望自己在蓝线上。
09:46
Because the blue line is a better line. The red line
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因为蓝线表示更好的身体状况,
09:48
is way downhill, the blue line is a good line.
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红线表示在走下坡路,而蓝线表示状况良好。
09:50
So, you know we said -- we looked at this, and what I love also
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因此,你知道我在说什么——我们关注这些数据,我发现,
09:54
is that people always accuse these Internet sites
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人们总是指责这些网站在促使他们使用不好的药物,
09:56
of promoting bad medicine and having people do things irresponsibly.
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不负责任地指导病人做这做那。
09:59
So, this is what happened when PNAS published this.
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这就是PNAS发表这篇文章之后所发生的故事。
10:02
Ten percent of the people in our system took lithium.
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我们系统中有百分之十的病人使用了“锂”,
10:05
Ten percent of the patients started taking lithium based on 16 patients of data
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他们根据这篇烂文章中16个病人的数据,
10:08
in a bad publication.
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就开始使用这种药物。
10:10
And they call the Internet irresponsible.
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他们控诉互联网的不负责任。
10:12
Here's the implication of what happens.
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这暗示了接下来发生的状况。
10:14
There's this one guy, named Humberto, from Brazil,
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这是其中的一个人,叫做汉伯特,来自巴西。
10:17
who unfortunately passed away nine months ago,
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他很不幸地在九个月前去世了。
10:20
who said, "Hey, listen. Can you help us answer this question?
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他说,“嘿听着,你们能帮我们解答这个问题吗?
10:22
Because I don't want to wait for the next trial, it's going to be years.
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因为我不想等到下一轮试验,那要好多年后了,
10:25
I want to know now. Can you help us?"
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我希望现在就知道结果。你能帮助我们吗?”
10:27
So, we launched some tools, we let them track their blood levels.
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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,
10:30
We let them share the data and exchange it.
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并分享和交换数据。
10:32
You know, a data network.
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你知道的,就是建立一个数据网络。
10:35
And they said, you know, "Jamie, PLM,
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而后,他们说,“吉米,PLM?
10:37
can you guys tell us whether this works or not?"
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你们能不能告诉我们这个药到底有没有用?”
10:39
And we went around and we talked to people,
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于是我们走访病人,
10:41
and they said, "You can't run a clinical trial like this. You know?
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他们说,“你知道吗,你们无法建立临床试验,
10:43
You don't have the blinding, you don't have data,
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你们没有双盲试验,你们没有数据,
10:45
it doesn't follow the scientific method.
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这样做根本不是科学的方法。
10:47
It's never going to work. You can't do it."
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这样是没用的,你们无法做到。”
10:49
So, I said, "Okay well we can't do that. Then we can do something harder."
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于是我说,“好吧,我们无法做到,那么我们就做更难的事。”
10:52
(Laughter)
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(笑)
10:55
I can't say whether lithium works in all ALS patients,
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我无法断言“锂”是否能够治疗肌萎缩性侧索硬化症,
10:57
but I can say whether it works in Humberto.
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但我可以知道它对于汉伯特是否有用。
11:00
I bought a Mac about two years ago, I converted over,
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两年前我买了一个苹果电脑,转换了操作系统,
11:02
and I was so excited about this new feature of the time machine
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我特别喜欢其中的新功能——时间机器。
11:04
that came in Leopard. And we said -- because it's really cool,
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它出现于雪豹系统中。我们说,它太酷了!
11:06
you can go back and you can look at the entire history of your computer,
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你可以退回到从前,可以一览你的电脑的所有历史记录,
11:08
and find everything you've lost, and I loved it.
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找回所有你丢失的东西,我太喜欢这个功能了。
11:10
And I said, "What if we built a time machine for patients,
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于是我想,如果我们为病人建立一个时间机器,
11:14
except instead of going backwards, we go forwards.
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但它不是回到从前,相反地,我们让它向前走,
11:17
Can we find out what's going to happen to you,
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那么我们能不能预知在病人身上将发生什么,
11:20
so that you can maybe change it?"
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并且是否可能去改变这个结果?
11:23
So, we did. We took all the patients like Humberto,
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于是我们就去尝试了。我们聚集了所有象汉伯特那样患者的資料
11:26
That's the Apple background, we stole that because we didn't have time
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这是苹果的背景,由于没有时间做我们自己的背景,我们就直接借用了。
11:28
to build our own. This is a real app by the way.
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这已经是一个真的应用
11:30
This is not just graphics.
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而不仅仅是图示,
11:32
And you take those data, and we find the patients like him, and we bring
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我们取出相关数据,找到和他一样的病人,
11:34
their data together. And we bring their histories into it.
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然后把他们的数据集合在一起,把他们的病史也放在一起。
11:38
And then we say, "Well how do we line them all up?"
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而后我们想,那么我们怎么把组织这些数据罗列起来呢?
11:40
So, we line them all up so they go together
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于是我们把数据
11:42
around the meaningful points,
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围绕那些有意义的数据点组织起来,
11:44
integrated across everything we know about the patient.
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综合了所有关于这个病人的信息。
11:46
Full information, the entire course of their disease.
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这就是他们患病的整个过程,
11:50
And that's what is going to happen to Humberto,
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也正是汉伯特将要面对的病情,
11:52
unless he does something.
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除非他额外采用了别的措施。
11:54
And he took lithium, and he went down the line.
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而他服用了“锂”,于是他的病情比这个预期恶化了,
11:57
And it works almost every time.
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每次服用过后,几乎毫无例外地出现这个结果。
12:00
Now, the ones that it doesn't work are interesting.
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那么,那些没有恶化的情况就非常值得关注。
12:02
But almost all the time it works.
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不过,绝大多数时候都维持了恶化的规律。
12:05
It's actually scary. It's beautiful.
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这看起来完美得令人触目惊心。
12:07
So, we couldn't run a clinical trial, we couldn't figure it out.
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因此,虽然我们不能通过临床试验来得出结论,
12:09
But we could see whether it was going to work for Humberto.
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但我们可以预知这个药对汉伯特是否有效。
12:12
And yeah, all the clinicians in the audience will talk about power
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我知道,在座的临床医生们都会说到强度
12:14
and all the standard deviation. We'll do that later.
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和标准差,我们等等也会谈到这点。
12:16
But here is the answer
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但是,让我们先来看看
12:20
of the mean of the patients that actually decided
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那些决定要服用“锂”的病人
12:22
to take lithium.
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的平均结果。
12:24
These are all the patients that started lithium.
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这些是所有开始使用“锂”的病人。
12:26
It's the Intent to Treat Curve.
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统计的意图是绘出治疗曲线。
12:28
You can see here, the blue dots on the top, the light ones,
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于是你可以看到,上面淡淡的蓝色的点,
12:32
those are the people in the study in PNAS
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是那篇PNAS的文章里研究的病人,
12:34
that you wanted to be on. And the red ones are the ones,
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也就是大家都希望得到的结果。而下面那些红色的、
12:36
the pink ones on the bottom are the ones you didn't want to be.
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粉色的,就是大家都避之惟恐不及的状况。
12:38
And the ones in the middle are all of our patients
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中间的数据都是来自我们网站的病人,
12:41
from the start of lithium at time zero,
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以开始服用“锂”的时候为时间零点,
12:43
going forward, and then going backward.
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正数代表服用后,负数代表服用前。
12:47
So, you can see we matched them perfectly, perfectly.
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你可以看到,这些数据完美地一致,
12:50
Terrifyingly accurate matching.
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令人惊奇地一致。
12:52
And going forward, you actually don't want to be a lithium patient this time.
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从服用之后的效果看,这回你就不再会希望自己是服用“锂”的病人了。
12:56
You're actually doing slightly worse -- not significantly,
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因为服药之后,你的病情变得有些恶化了,虽然并不是严重恶化,
12:58
but slightly worse. You don't want to be a lithium patient this time.
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但还是略有恶化。这次你就不希望自己是使用这个药物的病人了。
13:01
But you know, a lot of people dropped out,
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但是,在这个过程中,很多病人半途放弃了,
13:04
the trial, there is too much drop out.
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数量非常地多。
13:06
Can we do the even harder thing? Can we go to the patients
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我们能不能做一件更有难度的事呢?
13:08
that actually decided to stay on lithium,
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我们能不能去找那些决定持续使用“锂”的病人,
13:12
because they were so convinced they were getting better?
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因为他们非常坚信他们的病情会得到好转。
13:14
We asked our control algorithm,
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于是我们去查询控制算法的结果,
13:16
are those 69 patients -- by the way, you'll notice
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有69位病人坚持下来,顺便说一句,
13:18
that's four times the number of patients in the clinical trial --
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你可能会注意到,这个数目是临床试验病人数目的四倍。
13:21
can we look at those patients and say,
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我们看着这些数据,就在想,
13:24
"Can we match them with our time machine
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我们是否能用我们的时光机器,
13:27
to the other patients that are just like them,
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将他们的数据与其他与他们相似的病人比较,
13:29
and what happens?"
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看看会发生什么?
13:31
Even the ones that believed they were getting better
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结果是,即使是那些相信他们会有所好转的病人,
13:34
matched the controls exactly. Exactly.
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他们的结果还是与控制组相同。完全相同。
13:37
Those little lines? That's the power.
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那些短线是什么呢?那就是强度
13:39
So, we -- I can't tell you lithium doesn't work. I can't tell you
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于是,我不能告诉你“锂”没有用,
13:41
that if you did it at a higher dose
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我也不能告诉你如果你使用了更高的剂量,
13:43
or if you run the study proper -- I can tell you
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就更加准确。我只能告诉你,
13:45
that for those 69 people that took lithium,
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对于那69名使用了“锂”的病人,
13:49
they didn't do any better than the people that were just like them,
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他们并没有比类似于他们的病人有明显的改善。
13:51
just like me,
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象我这样的。 (指普通的人)
13:53
and that we had the power to detect that at about
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我们用了原来报告中使用的1/4的剂量
13:56
a quarter of the strengths reported in the initial study.
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检测出这个结论
13:59
We did that one year ahead of the time
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我们比美国国家卫生研究院赞助第一次临床试验还早一年
14:02
when the first clinical trial funded by the NIH
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就完成了这个测试。
14:04
for millions of dollars failed for futility last week,
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而他们花数百万美元赞助的试验,
14:07
and announced it.
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却在上周刚刚宣布用那药没有功效
14:10
So, remember I told you about my brother's stem cell transplant.
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所以,记得我曾告诉过你们我弟弟移植干细胞的事。
14:13
I never really knew whether it worked.
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我从来都没有真正了解过这对他是否有效。
14:16
And I put 100 million cells in his cisterna magna,
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是的,我在他的小脑延髓池和腰部脊髓
14:19
in his lumbar cord,
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植入了一亿个细胞,
14:21
and filled out the IRBs and did all this work,
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并注满了IRBs,完成了这所有的工作,
14:23
and I never really knew.
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我却根本不知道结果如何。
14:26
How did I not know?
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为什么我会不知道呢?
14:28
I mean, I didn't know what was going to happen to him.
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我是说,我不知道接下来他会发生什么状况。
14:30
I actually asked Tim, who is the quant in our group --
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我还询问了蒂姆,他是我们组的数据分析师——
14:33
we actually searched for about a year to find someone
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事实上,我们花了一年时间去找一个
14:36
who could do the sort of math and statistics and modeling
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能做医疗数据的数学分析、统计分析以及建模的人,
14:38
in healthcare, couldn't find anybody. So, we went to the finance industry.
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但一个人都找不到。于是,我们把目光投降金融业,
14:41
And there are these guys who used to model the future
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那里有一帮人,对利率走向建模,
14:43
of interest rates, and all that kind of stuff.
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以及做其他一些类似的项目。
14:45
And some of them were available. So, we hired one.
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他们中有一些人那时正没事做,于是我们就雇了一个。
14:48
(Laughter)
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(笑)
14:51
We hired them, set them up, assisting at lab.
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我们雇佣了这些人,安顿好他们,让他们在实验室帮忙。
14:53
I I.M. him things. That's the way I communicate with him,
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我发送即时消息给他。这就是我们交流的方式,
14:55
is like a little guy in a box. I I.M.ed Tim. I said,
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像与盒子里的一个小人对话。我给他发送即时消息说,
14:57
"Tim can you tell me whether my brother's stem cell transplant
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“蒂姆,你能告诉我我弟弟的干细胞移植
14:59
worked or not?"
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是否有效吗?”
15:02
And he sent me this two days ago.
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于是两天前,他发送了这个给我。
15:05
It was that little outliers there. You see that guy that lived a long time?
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这里面有一些异常值。你看到那个活了很久的人吗?
15:08
We have to go talk to him. Because I'd like to know what happened.
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我们得去和他谈一谈,因为我希望知道其中的原因。
15:10
Because something went different.
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因为在他身上,有一些因素变化了,
15:12
But my brother didn't. My brother went straight down the line.
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但这并没发生在我弟弟身上,我弟弟的状况沿着这条线急转直下。
15:15
It only works about 12 months.
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这个版本只记录了12个月。
15:17
It's the first version of the time machine.
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这是时间机器的第一个版本,
15:19
First time we ever tried it. We'll try to get it better later
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杰米 海伍德:我弟弟激发出的好点子
15:21
but 12 months so far.
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到目前为止只有12个月。
15:24
And, you know, I look at this,
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我看着这些
15:28
and I get really emotional.
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我变得非常激动。
15:30
You look at the patients, you can drill in all the controls,
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你看看这些病人。你可以尝试所有的控制比较,
15:32
you can look at them, you can ask them.
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你可以看到他们的变化,你可以询问他们的情况。
15:34
And I found a woman that had --
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我还发现一个女病人——
15:37
we found her, she was odd because she had data
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我们发现她的异常,
15:39
after she died.
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因为在她死后还有更新数据。
15:41
And her husband had come in and entered her last functional scores,
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原来是她的丈夫登陆了帐号,并输入她最后的功能数据,
15:44
because he knew how much she cared.
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因为他知道她生前多么在乎这个网站。
15:47
And I am thankful.
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我很感激。
15:50
I can't believe that these people,
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我无法相信这些人们,
15:52
years after my brother had died,
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他们在我弟弟死后那么多年,
15:54
helped me answer the question about whether
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还在帮助我解答
15:56
an operation I did, and spent millions of dollars on
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数年前我花了百万美元做的那个手术
15:59
years ago, worked or not.
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是否有效的问题。
16:01
I wished it had been there
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在我初次建立这个网站的时候,
16:03
when I'd done it the first time,
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我希望它早已存在。
16:05
and I'm really excited that it's here now,
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而现在,我为它的存在感到非常激动,
16:07
because the lab that I founded
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因为我建立的实验室获得了一些
16:12
has some data on a drug that might work,
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有希望的药物的数据,
16:14
and I'd like to show it.
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我希望能展示它们。
16:18
I'd like to show it in real time, now,
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我希望现在就能实时地展示它们。
16:20
and I want to do that for all of the diseases that we can do that for.
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我想为所有我们能研究的疾病都展开这样的研究。
16:25
I've got to thank the 45,000 people
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我得感谢这45,000个参与这个
16:28
that are doing this social experiment with us.
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社会实验的病人。
16:31
There is an amazing journey we are going on
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这是一个我们一起经历的传奇旅程,
16:34
to become human again,
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在这一路上,我们再次成为人类,
16:36
to be part of community again,
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再次融入这个社区,
16:39
to share of ourselves, to be vulnerable,
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分享我们自己,变得敏感,
16:41
and it's very exciting. So, thank you.
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这是十分令人激动的。所以,谢谢你们大家。
16:44
(Applause)
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(鼓掌)
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