TEDMED 2009
Jamie Heywood: The big idea my brother inspired
杰米 海伍德：我弟弟激发出的好点子
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当吉米.海伍德的弟弟被诊断为肌萎缩性侧索硬化症后，吉米自己也投身于与这个疾病的抗争之中。海伍德兄弟建立了一个新颖独特的网站，在这个网站上，病人们可以分享和跟踪监测疾病相关的数据。进而，他们发现这些来自集体的数据能够发挥强大的支持、解释和预测的作用。
Jamie Heywood - Healthcare revolutionary
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him. Full bio
When MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him. Full bio
Double-click the English transcript below to play the video.
00:15
When my brother called me in December of 1998,
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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）
ABOUT THE SPEAKER
Jamie Heywood - Healthcare revolutionaryWhen MIT-trained mechanical engineer Jamie Heywood discovered that his younger brother was diagnosed with the terminal illness ALS, he focused all his energy on founding revolutionary healthcare initiatives to help his brother and others like him.
Why you should listen
After finding out that his brother, Stephen, had the terminal illness ALS, Jamie Haywood founded the ALS Therapy Development Institute in 1999. ALS TDI is the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatments outside of academia and for-profit corporations. They were the first to publish research on the safety of using stem cells in ALS patients.
In 2005,Jamie and his youngest brother Ben, along with close friend Jeff Cole, built PatientsLikeMe.com to give patients control and access to their healthcare information and compare it to others like them. Its bold (and somewhat controversial) approach involves aggregating users health info in order to test the effects of particular treatments, bypassing clinical trials. It was named one of "15 companies that will change the world" by CNN Money.
Although his brother passed away in the fall of 2006, Jamie continues to serve as chairman of PatientsLikeMe and on the board of directors of ALS TDI. Jamie has raised over $50 million dollars for ALS TDI and was the subject of the biography His Brother’s Keeper, written by Jonathan Weiner. He was also featured in the documentary So Much So Fast, exploring the development of ALS TDI and the personal story of he and Stephen.
Jamie Heywood | Speaker | TED.com