TEDxMaastricht
Dave deBronkart: Meet e-Patient Dave
Dave deBronkart: 认识e-病人Dave
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当Dave deBronkart了解到他得了一种罕见的晚期癌症，他在网上向和他一样的一群病人求助，并且找到了一种甚至他自己的医生都没听过的治疗方法。这救了他的命。 现在他号召所有的病人彼此交流，了解自身的健康数据，使医疗事业在每个e-病人的基础上变得更好。
Dave deBronkart - e-Patient
Dave deBronkart wants to help patients help themselves -- by owning their medical data, connecting to fellow patients and making medical care better. Full bio
Dave deBronkart wants to help patients help themselves -- by owning their medical data, connecting to fellow patients and making medical care better. Full bio
Double-click the English transcript below to play the video.
00:15
It's an amazing thing that we're here to talk
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我们能在这里交流关于病人崛起之年
00:18
about the year of patients rising.
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是一件很奇妙的事情。
00:21
You heard stories earlier today
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今天早些时候，你们听到了
00:23
about patients who are taking control of their cases,
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有些病人能够自己掌握自己病情
00:26
patients who are saying, "You know what, I know what the odds are,
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这些病人会说：“你知道吗，虽然我知道机会不大，
00:29
but I'm going to go look for more information.
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但我还是要找到更多的信息。
00:31
I'm going to define
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我想定义
00:33
what the terms of my success are."
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什么对我算作成功
00:35
I'm going to be sharing with you
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我要和你们分享
00:37
how four years ago I almost died --
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我如何在四年前几乎死掉，
00:39
found out I was, in fact,
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实际上在那时我被认为
00:41
already almost dead.
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几乎已经死了。
00:43
And what I then found out about what's called the e-Patient movement --
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接着我在这个被称为是e-病人的运动中发现了什么 --
00:46
I'll explain what that term means.
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等会儿我会解释这个名词的含义。
00:48
I had been blogging under the name Patient Dave,
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我曾经用病人Dave这个名字写博客。
00:51
and when I discovered this,
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但在我发现这个运动以后
00:53
I just renamed myself e-Patient Dave.
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我把自己名字改成了e-病人Dave.
00:55
Regarding the word "patient,"
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说到病人这个词，
00:57
when I first started a few years ago
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当我几年前开始
00:59
getting involved in health care
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参与到医疗事业中
01:01
and attending meetings as just a casual observer,
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并且以一般听众出席各种会议的时候，
01:03
I noticed that people would talk about patients
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我注意到他们谈到病人
01:05
as if it was somebody who's not in the room here,
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就好像是在讲不一个不在这个现场的人，
01:08
somebody out there.
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毫无关系的人。
01:10
Some of our talks today, we still act like that.
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今天的某些演讲，仍然存在这样的态度。
01:12
But I'm here to tell you,
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但是我在这里要告诉你们，
01:14
"patient" is not a third-person word.
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病人绝不是一个第三人称的词。
01:18
You, yourself,
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你，你自己
01:20
will find yourself in a hospital bed --
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会有一天发现自己躺在医院的病床上--
01:22
or your mother, your child --
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或者你的母亲，你的孩子--
01:24
there are heads nodding, people who say, "Yes, I know exactly what you mean."
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我看到很多人在点头，他们说：“我完全了解你的意思'.
01:27
So when you hear what I'm going to talk about here today,
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所以，当你听到今天我要和你讲到的内容的时候，
01:30
first of all, I want to say
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首先，我想说，
01:32
that I am here on behalf
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我在这里代表了
01:34
of all the patients that I have ever met,
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我曾经遇到过的所有病人
01:36
all the ones I haven't met.
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和我从没遇到过的所有病人。
01:38
This is about letting patients play a more active role
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我们是要让病人们扮演一个更积极的角色
01:41
in helping health care, in fixing health care.
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在帮助医疗事业上，在修复医疗事业上。
01:44
One of the senior doctors at my hospital,
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我医院里的一个主任医师，
01:46
Charlie Safran, and his colleague, Warner Slack,
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Charlie Safran 和他的同事Warner Slack,
01:49
have been saying for decades
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这几十年都在宣扬这样一个观念：
01:51
that the most underutilized resource in all of health care
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在医疗产业里最没有被充分利用的资源
01:54
is the patient.
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就是病人。
01:56
They have been saying that since the 1970s.
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他们从1970年代就开始倡导这个观念。
01:59
Now I'm going to step back in history.
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现在我要回溯一下历史。
02:01
This is from July, 1969.
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1969年7月，
02:03
I was a freshman in college,
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我还是一个大学新生。
02:05
and this was when we first landed on the Moon.
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就是在这一年我们第一次登上了月球。
02:07
And it was the first time
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这是有史以来第一次
02:09
we had ever seen from another surface --
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我们从地球以外的空间看这个世界。
02:11
that's the place where you and I are right now,
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你和我现在，我们正在生活的
02:13
where we live.
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这个世界。
02:15
The world was changing.
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世界一直在改变，
02:17
It was about to change in ways that nobody could foresee.
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而且以没有人可以预料的方式在改变。
02:20
A few weeks later,
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登月的几个星期之后，
02:22
Woodstock happened.
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伍德斯托克音乐节举行了。
02:24
Three days of fun and music.
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整整三天的音乐和狂欢。
02:26
Here, just for historical authenticity,
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为了历史的真实性，
02:28
is a picture of me in that year.
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这里是一张我在当年的照片。
02:30
(Laughter)
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（笑声）
02:33
Yeah, the wavy hair, the blue eyes --
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是的，波浪状的头发，湛蓝的眼睛。
02:35
it was really something.
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真不是一般的。
02:37
That Fall of 1969,
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1969年的秋天，
02:39
the Whole Earth Catalog came out.
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《全球目录》出版了。
02:41
It was a hippie journal of self-sufficiency.
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这是一本自以为是，嬉皮风的期刊。
02:44
We think of hippies of being just hedonists,
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我们觉得嬉皮们仅仅是享乐主义者。
02:47
but there's a very strong component -- I was in that movement --
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但其中有一个重要的组成部分，我也曾经参与到那场运动中，
02:50
a very strong component
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就是一个很重要的
02:52
of being responsible for yourself.
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自己对自己负责的态度。
02:54
This book's title's subtitle
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这本书的副标题
02:56
is: "Access to Tools."
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是“拿起工具”。
02:58
And it talked about how to build your own house,
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它提到了如何建造自己的房子，
03:00
how to grow your own food, all kinds of things.
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如何种植自己的食物，所有像这样的事情。
03:02
In the 1980s,
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在1980年代。
03:04
this young doctor, Tom Ferguson,
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一个叫Tom Ferguson的医生，
03:06
was the medical editor of the Whole Earth Catalog.
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是《全球目录》的医学编辑。
03:09
And he saw that the great majority
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他发现我们在医学和保健领域
03:11
of what we do in medicine and health care
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做的绝大多数事情
03:13
is taking care of ourselves.
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就是保养自己。
03:15
In fact, he said it was 70 to 80 percent
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事实上，他说百分之70到80都是
03:18
of how we actually take care of our bodies.
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关于我们如何保养自己的身体。
03:20
Well he also saw
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他还发现，
03:22
that when health care turns to medical care
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当因为更严重的疾病，
03:25
because of a more serious disease,
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从保健转到医疗的时候，
03:27
the key thing that holds us back is access to information.
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拖我们后腿的主要是信息的不公开。
03:30
And when the Web came along, that changed everything,
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当互联网出现后，所有都改变了。
03:33
because not only could we find information,
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不仅仅因为我们能找到信息，
03:36
we could find other people like ourselves
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还因为我们能够找到像我们一样的其他人
03:39
who could gather, who could bring us information.
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帮我们收集，传递信息。
03:41
And he coined this term e-Patients --
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他发明了e-病人这个词。
03:44
equipped, engaged, empowered, enabled.
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装备好，态度正，力量强，能力高（这四个词英文首字母都是e）。
03:47
Obviously at this stage of life
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明显地在生命的这个阶段，
03:49
he was in a somewhat more dignified form than he was back then.
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他看起来比当时更人模人样的。(不再是个嬉皮了)
03:52
Now I was an engaged patient
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而现在我是一个全心投入的病人
03:54
long before I ever heard of the term.
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远在我听到这个词之前。
03:56
In 2006, I went to my doctor for a regular physical,
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2006年，我去找我医生做了一个例行的体检。
03:59
and I had said, "I have a sore shoulder."
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我告诉他，我肩膀酸。
04:01
Well, I got an X-ray,
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他就给我做了X光。
04:03
and the next morning --
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第二天早上，
04:05
you may have noticed, those of you who have been through a medical crisis
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你们可能注意到了，你们中那些经历过健康危机的
04:07
will understand this.
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会理解。
04:09
This morning, some of the speakers
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今天早上，有些演讲者
04:11
named the date when they found out about their condition.
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能顺口讲出他们发现自己患病的日期。
04:15
For me, it was 9:00 AM
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对我来说，是2007年1月3日
04:18
on January 3, 2007.
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早上九点。
04:20
I was at the office; my desk was clean;
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我在办公室，办公桌一尘不染；
04:22
I had the blue partition carpet on the walls.
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蓝色的窗帘挂在墙上，
04:26
The phone rang and it was my doctor.
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电话这时响了，是我的医生。
04:29
He said, "Dave, I pulled up the X-ray image
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他说，Dave，我在家把X光片找出来
04:32
on the screen on the computer at home."
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在电脑屏幕上观察，
04:34
He said, "Your shoulder's going to be fine,
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他说，你的肩膀没问题。
04:36
but Dave, there's something in your lung."
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但是Dave，你的肺部有些状况。
04:38
And if you look in that red oval,
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如果你看看那个红色椭圆状的东西，
04:40
that shadow was not supposed to be there.
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阴影应该在那个地方。
04:44
To make a long story short,
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长话短说，
04:46
I said, "So you need me to get back in there?"
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我问他，你需要我回去再做检查吗？
04:48
He said, "Yeah, we're going to need to do a CT scan of your chest."
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他说，“是的，我们要在你的胸部做个CT扫描。”
04:51
And in parting I said, "Is there anything I should do?"
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最后我问他，我能做点什么吗？
04:54
He said -- think about this one.
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他说-- 想想看，
04:56
This is the advice your doctor gives you:
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你医生给你这样的建议的时候，
04:58
"just go home and have a glass of wine with your wife."
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就回家和你的妻子喝一杯吧。
05:03
I went in for the CAT scan,
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我去做了CT扫描。
05:07
and it turns out there were five of these things in both my lungs.
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结果我肺部出现了五个阴影。
05:10
So at that point we knew that it was cancer.
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于是这时我们确定我得了癌症。
05:12
We knew it wasn't lung cancer.
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我们知道这不是肺癌，
05:14
That meant it was metastasized from somewhere.
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这意味着，是其他癌症转移到了肺部。
05:17
The question was, where from?
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问题是，到底是什么地方的癌症？
05:20
So I went in for an ultrasound.
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我又做了一次超声波。
05:22
I got to do what many women have --
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就像很多做孕检的妇女一样，
05:25
the jelly on the belly and bzzzz.
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胶抹在肚子上，然后滋滋地响。
05:28
My wife came with me.
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我妻子陪着我。
05:30
She's a veterinarian,
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她是一个兽医，
05:32
so she's seen lots of ultrasounds.
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所以她看过很多超声波片。
05:34
I mean, she knows I'm not a dog.
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我想说，她知道我不是一条狗，
05:37
But what we saw -- this is an MRI image.
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但我们看到的，这是MRI的图像。
05:40
This is much sharper than an ultrasound would be.
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要比超声波清楚得多。
05:42
What we saw in that kidney
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我们在肾部
05:44
was that big blob there.
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看了一个大肿块。
05:46
And there were actually two of these.
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实际上是两个。
05:48
One was growing out the front and it had already erupted,
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一个长在前端，已经爆开。
05:50
and it latched onto the bowel.
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贴在肠子上。
05:52
One was growing out the back, and it attached to the soleus muscle,
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还有一个长在后端，和比目鱼肌连在一块。
05:55
which is a big muscle in the back that I'd never heard of,
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这是一个我从没听说过的在背部的一大块肌肉。
05:58
but all of a sudden I cared about it.
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但突然之间我开始关心它了。
06:01
I went home.
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我回到了家
06:03
Now I've been Googling -- I've been online since 1989 on CompuServe.
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现在我一直在用Google搜索，自1989年其就用Compuserv(早期美国网络提供商)上网。
06:06
I went home, and I know you can't read the details here;
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我回到了家，我知道你们不可能知道这些细节。
06:08
that's not important.
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但这不重要。
06:10
My point is I went to a respected medical website,
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我想说的是，我去了一个有声望的医学网站，
06:12
WebMD,
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WebMD.
06:14
because I know how to filter out junk.
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因为我知道怎么过滤掉垃圾。
06:17
I also found my wife online.
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我在网上认识了我的妻子。
06:19
Before I met her,
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在认识她之前，
06:21
I went through some suboptimal search results.
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我处理了一些不是很理想的搜索结果。
06:23
(Laughter)
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（笑声）
06:25
So I looked for quality information.
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所以我尝试搜索有质量的信息
06:28
There's so much about trust --
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这是和信任非常有关的事情。
06:30
what sources of information can we trust?
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什么来源的信息我们能信任？
06:32
Where does my body end
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我的身体能承受到什么地步？
06:35
and an invader start?
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侵略者从哪里开始进攻？
06:37
And cancer, a tumor, is something you grow out of your own tissue.
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癌症，一个肿瘤，是从你自己身体的组织里长出来的。
06:40
How does that happen?
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这是怎么发生的？
06:42
Where does medical ability
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医疗水平能解决
06:44
end and start?
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到什么程度？
06:46
Well, so what I read on WebMD:
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于是我在WebMD上读到，
06:48
"The prognosis is poor
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发展中的肾癌
06:51
for progressing renal cell cancer.
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治愈率很低
06:53
Almost all patients are incurable."
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几乎所有的病人都是治不好的。
06:56
I've been online long enough to know
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以我在上网这么多年的经验，我知道
06:58
if I don't like the first results I get,
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如果我不喜欢我得到的第一个结果
07:00
I go look for more.
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我就能找到更多。
07:02
And what I found was on other websites,
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我在其他的网站上，
07:05
even by the third page of Google results,
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即使到了Google搜索结果的第三页，
07:07
"Outlook is bleak",
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前景不可观。
07:09
"Prognosis is grim."
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治愈率低下。
07:11
And I'm thinking, "What the heck?"
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我想说，这是怎么了
07:13
I didn't feel sick at all.
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我一点不觉得有什么不舒服
07:15
I mean, I'd been getting tired in the evening,
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我会在傍晚的时候觉得累，
07:17
but I was 56 years old.
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但我已经56岁。
07:19
I was slowly losing weight,
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我体重在慢慢地减少，
07:21
but for me, that was what the doctor told me to do.
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但对我来说，这正是医生告诉我要去做的
07:24
It was really something.
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真不知道这是一个什么事儿。
07:27
And this is the diagram of stage four kidney cancer
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这是一个第四阶段肾癌的图片。
07:30
from the drug I eventually got.
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从我最终吃的药物里得到的。
07:32
Totally by coincidence, there's that thing in my lung.
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完全巧合的，我的肺里也有同样的东西。
07:35
In the left femur, the left thigh bone, there's another one.
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在左股骨，左大腿骨，还有另外一个。
07:38
I had one. My leg eventually snapped.
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我有一个。我的腿最后断掉了。
07:40
I fainted and landed on it, and it broke.
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我昏倒，落在腿上，腿就断了。
07:43
There's one in the skull,
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颅骨上有一个，
07:45
and then just for good measure, I had these other tumors --
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为了描述清楚，我有这些其他的肿瘤
07:47
including, by the time my treatment started,
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包括，在我开始治疗的时候，
07:49
one was growing out of my tongue.
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我的舌头里长了一个。
07:51
I had kidney cancer growing out of my tongue.
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我的肾癌转移到了我的舌头里。
07:53
And what I read was that my median survival
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我了解到平均存活期
07:55
was 24 weeks.
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是24个星期。
07:57
This was bad.
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这很糟糕。
07:59
I was facing the grave.
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我一条腿就已经跨到坟墓里去了。
08:02
I thought, "What's my mother's face going to look like
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我想，我的母亲的脸在我的葬礼上看起来
08:04
on the day of my funeral?"
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会怎么样？
08:06
I had to sit down with my daughter
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我不得不坐下来和我的女儿
08:08
and say, "Here's the situation."
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说，情况是这样的。
08:11
Her boyfriend was with her.
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她的男友也在场。
08:13
I said, "I don't want you guys to get married prematurely
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我说，我不希望你们过早地结婚
08:16
just so you can do it while Dad's still alive."
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仅仅因为你们想在爸爸还活着的时候把婚结了。
08:19
It's really serious.
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情况真的很严重。
08:21
Because if you wonder why patients are motivated and want to help,
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因为如果你想知道为什么病人们被激励而想彼此帮助，
08:24
think about this.
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这样想想。
08:26
Well, my doctor prescribed a patient community,
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我的医生告诉我了一个病人互助社区，
08:28
Acor.org,
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Acor.org
08:30
a network of cancer patients, of all amazing things.
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一个癌症病人的网络，有各种各样奇妙的东西。
08:33
Very quickly they told me,
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很快他们告诉我，
08:35
"Kidney cancer is an uncommon disease.
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肾癌是一种不常见的疾病。
08:37
Get yourself to a specialist center.
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找一个专科的治疗中心。
08:39
There is no cure, but there's something that sometimes works --
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没有治疗的方法，但是有种疗法有的时候会有效，
08:42
it usually doesn't --
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虽然它通常不会起效，
08:44
called high-dosage interleukin.
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这种方法叫做高剂量白介素。
08:46
Most hospitals don't offer it,
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大部分医院不提供这种疗法。
08:48
so they won't even tell you it exists.
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所以他们根本不告诉这种疗法存在。
08:50
And don't let them give you anything else first.
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先不要让他们告诉你别的事情。
08:52
And by the way, here are four doctors
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对了，在你所在的美国的地区，有四位医生
08:54
in your part of the United States who offer it and their phone numbers."
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提供这种疗法，他们的电话号码是。
08:57
How amazing is that?
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这是多么美妙的事情？
08:59
(Applause)
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（掌声）
09:02
Here's the thing.
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现在的情况是。
09:04
Here we are, four years later:
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我们在这里，四年以后，
09:06
you can't find a website that gives patients that information.
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你找不到一个网站告诉你这个信息。
09:09
Government-approved, American Cancer Society,
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政府批准，美国癌症协会，
09:12
but patients know what patients want to know.
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但是病人还是能知道病人想知道的。
09:15
It's the power of patient networks.
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这就是病人网络的力量。
09:18
This amazing substance --
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这个奇妙的物质
09:20
again I mentioned, where does my body end?
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我再次提到，我身体的极限在哪里？
09:23
My oncologist and I talk a lot these days
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我的肿瘤医生和我在这段时间经常交流,
09:25
because I try to keep my talks technically accurate.
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因为我试着让我的演讲技术上精确。
09:27
And he said, "You know, the immune system
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他说，你知道，免疫系统
09:29
is good at detecting invaders --
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在侦察入侵者方面非常在行。
09:32
bacteria coming from outside --
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细菌来自外部，
09:35
but when it's your own tissue that you've grown,
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但是当长的是你自己的组织的时候，
09:37
it's a whole different thing."
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这是完全不同的一回事儿。
09:39
And I went through a mental exercise actually,
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我其实经历过了一次精神上的锻炼，
09:42
because I started a patient support community of my own
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因为我自己在一个网站上创办了一个
09:45
on a website,
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病人互助的社区。
09:47
and one of my friends, one of my relatives actually,
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我的一个朋友，我的一个亲戚，实际上是，
09:49
said, "Look, Dave, who grew this thing?
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说，看Dave谁说长这个东西？
09:53
Are you going to set yourself up
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你想要在精神上攻击你自己
09:55
as mentally attacking yourself?"
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来挖洞给自己跳吗？
09:57
So we went into it.
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于是我们着手开始。
09:59
And the story of how all that happens is in this book.
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这本书里有关于这些怎么发生的故事。
10:02
Anyway, this is the way the numbers unfolded.
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无论如何，这是这些数字如何被发现的。
10:04
Me being me, I put the numbers from my hospital's website
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我说做就做，我把这些关于我肿瘤大小的数字从我医院的网站上
10:07
from my tumor sizes into a spreadsheet.
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转到电子表格里。
10:09
Don't worry about the numbers.
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别在意这些数字。
10:11
You see, that's the immune system.
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你们看，这是免疫系统。
10:13
Amazing thing, those two yellow lines
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这奇妙的两条黄线，
10:15
are where I got the two doses of interleukin
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就是我注射两剂白介素的地方。
10:17
two months apart.
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两个月以后，
10:19
And look at how the tumor sizes plummeted in between.
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再看肿瘤大小是如何迅速减少的
10:22
Just incredible.
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简直是难以置信。
10:24
Who knows what we'll be able to do when we learn to make more use of it.
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谁能想到我们能够做什么，当我们学会跟多利用一件是的时候。
10:27
The punch line is that a year and a half later,
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关键是，一年半以后，
10:30
I was there when this magnificent young woman, my daughter,
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在这个美丽的年轻女人，我的女儿，
10:33
got married.
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结婚的时候，我出现了在现场。
10:35
And when she came down those steps,
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当她走下这些台阶时，
10:38
and it was just her and me for that moment,
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那一刻好像只有我和她。
10:40
I was so glad that she didn't have to say to her mother,
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我真是高兴她不用和她母亲说，
10:43
"I wish Dad could have been here."
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我真希望我爸爸能在这儿。
10:45
And this is what we're doing
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这就是我们在做的，
10:47
when we make health care better.
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为了使医疗事业更好。
10:49
Now I want to talk briefly about a couple of other patients
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现在我想简单的谈一下另外几位病人，
10:52
who are doing everything in their power to improve health care.
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他们用尽所有的力量来改善医疗事业。
10:55
This is Regina Holliday,
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这是Regina Holliday.
10:57
a painter in Washington D.C.,
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一位华盛顿的画家。
10:59
whose husband died of kidney cancer a year after my disease.
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她的丈夫死于肾癌，就在我得肾癌一年以后。
11:02
She's painting here a mural
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她在这儿画了一幅壁画，
11:04
of his horrible final weeks in the hospital.
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描绘了她丈夫在医院悲惨的最后几个星期。
11:07
One of the things that she discovered
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她发现的事情之一是
11:09
was that her husband's medical record
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她丈夫的医疗记录
11:11
in this paper folder
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在这个纸质的文件夹里
11:13
was just disorganized.
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乱七八糟的放着。
11:15
And she thought, "You know, if I have a nutrition facts label
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她想，如果我能在麦片包装上找到
11:18
on the side of a cereal box,
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营养信息的标签。
11:20
why can't there be something that simple
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为什么不能有一种简单的方法
11:22
telling every new nurse who comes on duty,
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告诉每一个新来值班的护士，
11:24
every new doctor,
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每一个新的医生，
11:26
the basics about my husband's condition?"
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我丈夫病情的基本情况。
11:28
So she painted this medical facts mural
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于是她把这些医疗状况画成了壁画，
11:30
with a nutrition label,
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加上了一个营养标签。
11:32
something like that,
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就像这个上面一样。
11:34
in a diagram of him.
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在他的图表上。
11:36
She then, last year, painted this diagram.
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她然后在去年画了这张表。
11:39
She studied health care like me.
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她像我一样演技医疗事业。
11:41
She came to realize that there were a lot of people
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她意识到有很多人，
11:43
who'd written patient advocate books
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他们写了倡导病人权利的书，
11:45
that you just don't hear about at medical conferences.
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但你们就是在医学会议上听不到这些书。
11:48
Patients are such an underutilized resource.
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病人是如此没有被充分利用的资源，
11:52
Well as it says in my introduction,
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就像我在开头介绍里说到，
11:54
I've gotten somewhat known for saying that patients should have access to their data.
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我不知何故以倡导病人应该有取得原始数据的权利而被知道
11:57
And I actually said at one conference a couple of years ago,
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我实际上在几年之前在一个会议上说到，
12:00
"Give me my damn data,
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给我该死的数据，
12:02
because you people can't be trusted to keep it clean."
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因为你们这些人不能被信任，让这些数据清楚明白。
12:05
And here she has our damned data --
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听她有我们该死的数据。
12:07
it's a pun --
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这有一个寓意（指上面提到的壁画）
12:09
which is starting to break out, starting to break through --
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它开始涌出，开始突破。
12:11
the water symbolizes our data.
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水就象征着我们的数据。
12:14
And in fact, I want to do a little something improvisational for you here.
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实际上，我想为你们来点即兴的东西，
12:17
There's a guy on Twitter that I know,
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在Twitter上我认识一个人，
12:19
a health IT guy outside Boston,
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一个在波士顿附近医疗信息业工作的人，
12:21
and he wrote the e-Patient rap.
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他写了一首饶舌歌，
12:24
And it goes like this.
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是这样唱得，
12:32
♫ Gimme my damn data ♫
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♫给我该死的数据，♫
12:34
♫ I want to be an e-Patient just like Dave ♫
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♫我想要成为一个e-病人就像Dave,♫
12:36
♫ Gimme my damn data, cuz it's my life to save ♫
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♫给我该死的数据，因为需要救得是我的命♫
12:39
Now I'm not going to go any further.
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我跑题得远了。
12:41
(Applause)
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（掌声）
12:55
Well thank you. That shot the timing.
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谢谢你们，时间刚刚好。
12:58
(Laughter)
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（笑声）
13:00
Think about the possibility,
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想想这个可能性，
13:02
why is it that iPhones and iPads
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为什么iPhone和iPad要
13:04
advance far faster
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发展得快得多
13:06
than the health tools that are available to you
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比那些你能够让你用来
13:08
to help take care of your family?
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照顾你家庭的医疗器具
13:10
Here's a website, VisibleBody.com,
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这有一个网站，VisibleBody.com
13:12
that I stumbled across.
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我偶尔会访问，
13:14
And I thought, "You know, I wonder what my soleus muscle is?"
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我想说，我想了解什么是比目鱼肌？
13:17
So you can click on things and remove it.
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你可以点击不同的部位并且移动它。
13:19
And I saw, "Aha, that's the kidney and the soleus muscle."
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我发现，哈，这是肾脏，这是比目鱼肌。
13:22
And I was rotating it in 3D
325
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我在3D的模式下旋转，
13:24
and saying, "I understand now."
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说到，我现在了解了。
13:26
And then I realized it reminded me of Google Earth,
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这让我想到Google Earth,
13:29
where you can fly to any address.
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你可以飞到任何一个地址。
13:32
And I thought, "Why not take this
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我想，为什么不把这个
13:34
and connect it to my digital scan data
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和我的数码扫描数据联在一起，
13:37
and have Google Earth for my body?"
331
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为我的身体造一个Google Earth?
13:40
What did Google come out with this year?
332
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Google今年推出了什么？
13:42
Now there's Google Body browser.
333
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现在有Google 身体浏览器
13:45
But you see, it's still generic.
334
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但你可以看到，它仍然是泛泛的
13:47
It's not my data.
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不是我自己的数据。
13:49
But if we can get that data out from behind the dam
336
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但是如果你能把数据从坝后面弄出来，
13:52
so software innovators can pounce on it,
337
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软件开发师能在这些数据上改造，
13:55
the way software innovators like to do,
338
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就像软件开发师喜欢做得那样。
13:57
who knows what we'll be able to come up with.
339
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谁知道我能想出什么。
13:59
One final story: this is Kelly Young,
340
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2000
最后一个故事：这是Kelly Young.
14:01
a rheumatoid arthritis patient
341
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2000
一个类风湿性关节炎的患者。
14:03
from Florida.
342
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2000
她来自佛罗里达。
14:05
This is a live story
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这是一个正在发生的故事。
14:07
unfolding just in the last few weeks.
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就在最近几个星期展开。
14:09
RA patients, as they call themselves --
345
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类风病人，他们这样称呼自己
14:12
her blog is RA Warrior --
346
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她的博客叫类风勇士-
14:14
have a big problem
347
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2000
有一个很大的问题。
14:16
because 40 percent of them have no visible symptoms.
348
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因为他们其中百分之40都没有可以观察到的症状。
14:19
And that makes it just really hard to tell how the disease is going.
349
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这就让了解疾病发展的状况变得很难。
14:22
And some doctors think, "Yeah right, you're really in pain."
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有些医生会觉得，是啊，你真的很痛。
14:25
Well she found, through her online research,
351
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但是她通过网上的研究发现，
14:28
a nuclear bone scan
352
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2000
一种核子骨扫描
14:30
that's usually used for cancer,
353
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它通常用在癌症诊断上，
14:32
but it can also reveal inflammation.
354
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但它也能够发现炎症。
14:34
And she saw
355
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她发现
14:36
that if there is no inflammation
356
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如果没有炎症，
14:38
then the scan is a uniform gray.
357
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扫描是一致的灰色。
14:41
So she took it.
358
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2000
所以她做了一次扫描。
14:43
And the radiologist report said, "No cancer found."
359
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3000
放射科医生的报告上说，无癌症迹象。
14:46
Well that's not what he was supposed to do with it.
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这不是他通常会做的事情。
14:48
So she had it read again, she wanted to have it read again,
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于是她让他把片子再读一遍。她想要把片子再读一遍。
14:51
and her doctor fired her.
362
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医生不干了。
14:53
She pulled up the CD.
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她找出CD.
14:55
He said, "If you don't want to follow my instructions,
364
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他说，如果你不想遵守我的指导
14:57
go away."
365
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2000
就走开。
14:59
So she pulled up the CD of the scan images,
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于是她找出存有扫描图像的CD,
15:02
and look at all those hot spots.
367
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查看所有那些重要的位点。
15:04
And she's now actively engaged on her blog
368
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3000
现在她活跃在她的博客上
15:07
in looking for assistance in getting better care.
369
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3000
寻求帮助来获得更好的治疗。
15:10
See, that is an empowered patient -- no medical training.
370
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你看，这就是一个把命运握在自己手里的病人，没有任何医学专业训练。
15:13
We are, you are,
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我们是，你们是
15:15
the most underused resource in health care.
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医疗事业里最没有被充分利用的资源。
15:18
What she was able to do
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她能做这些
15:20
was because she had access to the raw data.
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是因为她能拿到原始的数据。
15:22
How big a deal was this?
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这个是多大的一个问题？
15:24
Well at TED2009,
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在TED2009上，
15:26
Tim Berners-Lee himself, inventor of the Web, gave a talk
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Tim Berners-Lee自己，互联网的发明这，做了一个报告，
15:29
where he said the next big thing
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他说下一个重要的发展
15:32
is not to have your browser go out
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不是用你的浏览器
15:34
and find other people's articles about the data,
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来找到关于这些数据的文章，
15:36
but the raw data.
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而是真的真正的原始数据。
15:38
And he got them chanting by the end of the talk,
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在报告的最后，他让所有的听众一起喊
15:40
"Raw data now.
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现在就要原始数据
15:42
Raw data now."
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现在就要原始数据。
15:44
And I ask you,
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我请求你们，请和我一起说
15:46
three words, please, to improve health care:
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三个词，为了改善医疗事业，
15:49
let patients help.
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让 病人 出份力
15:51
Let patients help.
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让 病人 出份力
15:53
Let patients help.
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让 病人 出份力
15:55
Let patients help.
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让 病人 出份力
15:57
Thank you.
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谢谢你们。
15:59
(Applause)
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（掌声）
16:15
For all the patients around the world
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对全世界各地
16:18
watching this on the webcast,
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观看这个网络视频的病人们：
16:20
God bless you, everyone -- let patients help.
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愿主保佑你们每一个人。让病人们出一份力。
16:22
Host: And bless yourself. Thank you very much.
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主持人：也保佑你自己。非常感谢你。
ABOUT THE SPEAKER
Dave deBronkart - e-PatientDave deBronkart wants to help patients help themselves -- by owning their medical data, connecting to fellow patients and making medical care better.
Why you should listen
David deBronkart, better known as “e-patient Dave,” was diagnosed in January 2007 with kidney cancer at a very late stage. Odds were stacked against him, with tumors in both lungs, several bones and muscle tissue. He received great treatment, and was able to fight through and win the battle over his cancer. His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease.
deBronkart is now actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient.
Dave deBronkart | Speaker | TED.com