ABOUT THE SPEAKER
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.

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.

More profile about the speaker
Dave deBronkart | Speaker | TED.com
TEDxMaastricht

Dave deBronkart: Meet e-Patient Dave

Dave deBronkart: 认识e-病人Dave

Filmed:
645,614 views

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。
- 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

Double-click the English transcript below to play the video.

00:15
It's an amazing惊人 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耐心 rising升起.
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是一件很奇妙的事情。
00:21
You heard听说 stories故事 earlier today今天
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今天早些时候,你们听到了
00:23
about patients耐心 who are taking服用 control控制 of their cases,
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有些病人能够自己掌握自己病情
00:26
patients耐心 who are saying, "You know what, I know what the odds可能性 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信息.
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但我还是要找到更多的信息。
00:31
I'm going to define确定
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我想定义
00:33
what the terms条款 of my success成功 are."
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什么对我算作成功
00:35
I'm going to be sharing分享 with you
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我要和你们分享
00:37
how four years年份 ago I almost几乎 died死亡 --
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我如何在四年前几乎死掉,
00:39
found发现 out I was, in fact事实,
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实际上在那时我被认为
00:41
already已经 almost几乎 dead.
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几乎已经死了。
00:43
And what I then found发现 out about what's called the e-PatientE-患者 movement运动 --
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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说明 what that term术语 means手段.
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等会儿我会解释这个名词的含义。
00:48
I had been blogging写博客 under the name名称 Patient患者 Dave戴夫,
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我曾经用病人Dave这个名字写博客。
00:51
and when I discovered发现 this,
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但在我发现这个运动以后
00:53
I just renamed改名 myself e-PatientE-患者 Dave戴夫.
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我把自己名字改成了e-病人Dave.
00:55
Regarding关于 the word "patient患者,"
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说到病人这个词,
00:57
when I first started开始 a few少数 years年份 ago
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当我几年前开始
00:59
getting得到 involved参与 in health健康 care关心
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参与到医疗事业中
01:01
and attending出席 meetings会议 as just a casual随便 observer观察者,
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并且以一般听众出席各种会议的时候,
01:03
I noticed注意到 that people would talk about patients耐心
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我注意到他们谈到病人
01:05
as if it was somebody who's谁是 not in the room房间 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会谈 today今天, we still act法案 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患者" is not a third-person第三人称 word.
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病人绝不是一个第三人称的词。
01:18
You, yourself你自己,
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你,你自己
01:20
will find yourself你自己 in a hospital醫院 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母亲, your child儿童 --
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或者你的母亲,你的孩子--
01:24
there are heads nodding点头, people who say, "Yes, I know exactly究竟 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今天,
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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代表
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我在这里代表了
01:34
of all the patients耐心 that I have ever met会见,
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我曾经遇到过的所有病人
01:36
all the ones那些 I haven't没有 met会见.
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和我从没遇到过的所有病人。
01:38
This is about letting出租 patients耐心 play a more active活性 role角色
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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帮助 health健康 care关心, in fixing定影 health健康 care关心.
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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前辈 doctors医生 at my hospital醫院,
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我医院里的一个主任医师,
01:46
Charlie查理 Safran赛峰, and his colleague同事, Warner华纳 Slack松弛,
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Charlie Safran 和他的同事Warner Slack,
01:49
have been saying for decades几十年
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这几十年都在宣扬这样一个观念:
01:51
that the most underutilized未充分利用 resource资源 in all of health健康 care关心
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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患者.
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就是病人。
01:56
They have been saying that since以来 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历史.
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现在我要回溯一下历史。
02:01
This is from July七月, 1969.
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1969年7月,
02:03
I was a freshman新生 in college学院,
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我还是一个大学新生。
02:05
and this was when we first landed登陆 on the Moon月亮.
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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看到 from another另一个 surface表面 --
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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地点 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生活.
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这个世界。
02:15
The world世界 was changing改变.
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世界一直在改变,
02:17
It was about to change更改 in ways方法 that nobody没有人 could foresee预料.
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而且以没有人可以预料的方式在改变。
02:20
A few少数 weeks later后来,
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登月的几个星期之后,
02:22
Woodstock伍德斯托克 happened发生.
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伍德斯托克音乐节举行了。
02:24
Three days of fun开玩笑 and music音乐.
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整整三天的音乐和狂欢。
02:26
Here, just for historical历史的 authenticity真伪,
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为了历史的真实性,
02:28
is a picture图片 of me in that year.
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这里是一张我在当年的照片。
02:30
(Laughter笑声)
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(笑声)
02:33
Yeah, the wavy波浪状的 hair头发, the blue蓝色 eyes眼睛 --
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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秋季 of 1969,
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1969年的秋天,
02:39
the Whole整个 Earth地球 Catalog目录 came来了 out.
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《全球目录》出版了。
02:41
It was a hippie嬉皮士 journal日志 of self-sufficiency自给自足.
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这是一本自以为是,嬉皮风的期刊。
02:44
We think of hippies嬉皮士 of being存在 just hedonists享乐主义者,
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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强大 component零件 -- I was in that movement运动 --
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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强大 component零件
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就是一个很重要的
02:52
of being存在 responsible主管 for yourself你自己.
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自己对自己负责的态度。
02:54
This book's图书 title's标题的 subtitle字幕
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这本书的副标题
02:56
is: "Access访问 to Tools工具."
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是“拿起工具”。
02:58
And it talked about how to build建立 your own拥有 house,
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它提到了如何建造自己的房子,
03:00
how to grow增长 your own拥有 food餐饮, 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年轻 doctor医生, Tom汤姆 Ferguson弗格森,
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一个叫Tom Ferguson的医生,
03:06
was the medical editor编辑 of the Whole整个 Earth地球 Catalog目录.
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是《全球目录》的医学编辑。
03:09
And he saw that the great majority多数
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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医学 and health健康 care关心
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做的绝大多数事情
03:13
is taking服用 care关心 of ourselves我们自己.
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就是保养自己。
03:15
In fact事实, he said it was 70 to 80 percent百分
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事实上,他说百分之70到80都是
03:18
of how we actually其实 take care关心 of our bodies身体.
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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健康 care关心 turns to medical care关心
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当因为更严重的疾病,
03:25
because of a more serious严重 disease疾病,
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从保健转到医疗的时候,
03:27
the key thing that holds持有 us back is access访问 to information信息.
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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卷筒纸 came来了 along沿, 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信息,
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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我们自己
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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收集, who could bring带来 us information信息.
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帮我们收集,传递信息。
03:41
And he coined创造 this term术语 e-PatientsE-患者 --
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他发明了e-病人这个词。
03:44
equipped装备, engaged订婚, empowered授权, enabled启用.
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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明显 at this stage阶段 of life
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明显地在生命的这个阶段,
03:49
he was in a somewhat有些 more dignified凝重 form形成 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订婚 patient患者
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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听说 of the term术语.
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远在我听到这个词之前。
03:56
In 2006, I went to my doctor医生 for a regular定期 physical物理,
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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-rayX-射线,
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他就给我做了X光。
04:03
and the next下一个 morning早上 --
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第二天早上,
04:05
you may可能 have noticed注意到, those of you who have been through通过 a medical crisis危机
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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理解 this.
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会理解。
04:09
This morning早上, some of the speakers音箱
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今天早上,有些演讲者
04:11
named命名 the date日期 when they found发现 out about their condition条件.
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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一月 3, 2007.
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早上九点。
04:20
I was at the office办公室; my desk was clean清洁;
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我在办公室,办公桌一尘不染;
04:22
I had the blue蓝色 partition划分 carpet地毯 on the walls墙壁.
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蓝色的窗帘挂在墙上,
04:26
The phone电话 rang and it was my doctor医生.
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电话这时响了,是我的医生。
04:29
He said, "Dave戴夫, I pulled up the X-rayX-射线 image图片
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他说,Dave,我在家把X光片找出来
04:32
on the screen屏幕 on the computer电脑 at home."
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在电脑屏幕上观察,
04:34
He said, "Your shoulder's肩关节 going to be fine,
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他说,你的肩膀没问题。
04:36
but Dave戴夫, 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椭圆,
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如果你看看那个红色椭圆状的东西,
04:40
that shadow阴影 was not supposed应该 to be there.
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阴影应该在那个地方。
04:44
To make a long story故事 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 CTCT scan扫描 of your chest胸部."
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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离别 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忠告 your doctor医生 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玻璃 of wine红酒 with your wife妻子."
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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扫描,
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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知道 that it was cancer癌症.
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于是这时我们确定我得了癌症。
05:12
We knew知道 it wasn't lung cancer癌症.
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我们知道这不是肺癌,
05:14
That meant意味着 it was metastasized转移 from somewhere某处.
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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超声.
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我又做了一次超声波。
05:22
I got to do what many许多 women妇女 have --
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就像很多做孕检的妇女一样,
05:25
the jelly果冻 on the belly肚皮 and bzzzzbzzzz.
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胶抹在肚子上,然后滋滋地响。
05:28
My wife妻子 came来了 with me.
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我妻子陪着我。
05:30
She's a veterinarian兽医,
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她是一个兽医,
05:32
so she's seen看到 lots of ultrasounds超声.
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所以她看过很多超声波片。
05:34
I mean, she knows知道 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 MRIMRI image图片.
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但我们看到的,这是MRI的图像。
05:40
This is much sharper更清晰 than an ultrasound超声 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 blobBLOB there.
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看了一个大肿块。
05:46
And there were actually其实 two of these.
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实际上是两个。
05:48
One was growing生长 out the front面前 and it had already已经 erupted爆发,
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一个长在前端,已经爆开。
05:50
and it latched锁存 onto the bowel.
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贴在肠子上。
05:52
One was growing生长 out the back, and it attached to the soleus比目鱼 muscle肌肉,
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还有一个长在后端,和比目鱼肌连在一块。
05:55
which哪一个 is a big muscle肌肉 in the back that I'd never heard听说 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突然 I cared照顾 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谷歌搜索 -- I've been online线上 since以来 1989 on CompuServeCompuServe公司.
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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细节 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重要.
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但这不重要。
06:10
My point is I went to a respected尊敬 medical website网站,
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我想说的是,我去了一个有声望的医学网站,
06:12
WebMDWebMD表示,
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WebMD.
06:14
because I know how to filter过滤 out junk破烂.
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因为我知道怎么过滤掉垃圾。
06:17
I also found发现 my wife妻子 online线上.
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我在网上认识了我的妻子。
06:19
Before I met会见 her,
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在认识她之前,
06:21
I went through通过 some suboptimal次优 search搜索 results结果.
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我处理了一些不是很理想的搜索结果。
06:23
(Laughter笑声)
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(笑声)
06:25
So I looked看着 for quality质量 information信息.
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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相信 --
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这是和信任非常有关的事情。
06:30
what sources来源 of information信息 can we trust相信?
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什么来源的信息我们能信任?
06:32
Where does my body身体 end结束
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我的身体能承受到什么地步?
06:35
and an invader侵略者 start开始?
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侵略者从哪里开始进攻?
06:37
And cancer癌症, a tumor, is something you grow增长 out of your own拥有 tissue组织.
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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发生?
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这是怎么发生的?
06:42
Where does medical ability能力
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医疗水平能解决
06:44
end结束 and start开始?
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到什么程度?
06:46
Well, so what I read on WebMDWebMD表示:
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于是我在WebMD上读到,
06:48
"The prognosis预测 is poor较差的
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发展中的肾癌
06:51
for progressing进展 renal cell细胞 cancer癌症.
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治愈率很低
06:53
Almost几乎 all patients耐心 are incurable不可救药."
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几乎所有的病人都是治不好的。
06:56
I've been online线上 long enough足够 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结果 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发现 was on other websites网站,
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我在其他的网站上,
07:05
even by the third第三 page of Google谷歌 results结果,
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即使到了Google搜索结果的第三页,
07:07
"Outlook外表 is bleak苍凉",
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前景不可观。
07:09
"Prognosis预测 is grim严峻."
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治愈率低下。
07:11
And I'm thinking思维, "What the heck赫克?"
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我想说,这是怎么了
07:13
I didn't feel sick生病 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得到 tired in the evening晚间,
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我会在傍晚的时候觉得累,
07:17
but I was 56 years年份 old.
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但我已经56岁。
07:19
I was slowly慢慢地 losing失去 weight重量,
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我体重在慢慢地减少,
07:21
but for me, that was what the doctor医生 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阶段 four kidney cancer癌症
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这是一个第四阶段肾癌的图片。
07:30
from the drug药物 I eventually终于 got.
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从我最终吃的药物里得到的。
07:32
Totally完全 by coincidence巧合, 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股骨, the left thigh大腿 bone, there's another另一个 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终于 snapped抢购.
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我有一个。我的腿最后断掉了。
07:40
I fainted昏厥 and landed登陆 on it, and it broke打破.
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我昏倒,落在腿上,腿就断了。
07:43
There's one in the skull头骨,
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颅骨上有一个,
07:45
and then just for good measure测量, I had these other tumors肿瘤 --
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为了描述清楚,我有这些其他的肿瘤
07:47
including包含, by the time my treatment治疗 started开始,
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包括,在我开始治疗的时候,
07:49
one was growing生长 out of my tongue.
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我的舌头里长了一个。
07:51
I had kidney cancer癌症 growing生长 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中位数 survival生存
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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面对 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母亲 face面对 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葬礼?"
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会怎么样?
08:06
I had to sit down with my daughter女儿
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我不得不坐下来和我的女儿
08:08
and say, "Here's这里的 the situation情况."
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说,情况是这样的。
08:11
Her boyfriend男朋友 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已婚 prematurely过早
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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爸爸的 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严重.
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情况真的很严重。
08:21
Because if you wonder奇迹 why patients耐心 are motivated动机 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医生 prescribed规定 a patient患者 community社区,
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我的医生告诉我了一个病人互助社区,
08:28
AcorACOR.org组织,
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Acor.org
08:30
a network网络 of cancer癌症 patients耐心, of all amazing惊人 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很快 they told me,
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很快他们告诉我,
08:35
"Kidney cancer癌症 is an uncommon罕见 disease疾病.
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肾癌是一种不常见的疾病。
08:37
Get yourself你自己 to a specialist专家 center中央.
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找一个专科的治疗中心。
08:39
There is no cure治愈, but there's something that sometimes有时 works作品 --
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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平时 doesn't --
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虽然它通常不会起效,
08:44
called high-dosage高剂量 interleukin白细胞介素.
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这种方法叫做高剂量白介素。
08:46
Most hospitals医院 don't offer提供 it,
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大部分医院不提供这种疗法。
08:48
so they won't惯于 even tell you it exists存在.
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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其他 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医生
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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部分 of the United联合的 States状态 who offer提供 it and their phone电话 numbers数字."
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提供这种疗法,他们的电话号码是。
08:57
How amazing惊人 is that?
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这是多么美妙的事情?
08:59
(Applause掌声)
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(掌声)
09:02
Here's这里的 the thing.
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现在的情况是。
09:04
Here we are, four years年份 later后来:
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我们在这里,四年以后,
09:06
you can't find a website网站 that gives patients耐心 that information信息.
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你找不到一个网站告诉你这个信息。
09:09
Government-approved政府批准, American美国 Cancer癌症 Society社会,
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政府批准,美国癌症协会,
09:12
but patients耐心 know what patients耐心 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功率 of patient患者 networks网络.
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这就是病人网络的力量。
09:18
This amazing惊人 substance物质 --
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这个奇妙的物质
09:20
again I mentioned提到, where does my body身体 end结束?
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我再次提到,我身体的极限在哪里?
09:23
My oncologist肿瘤科医生 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会谈 technically技术上 accurate准确.
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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免疫的 system系统
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他说,你知道,免疫系统
09:29
is good at detecting检测 invaders入侵者 --
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在侦察入侵者方面非常在行。
09:32
bacteria coming未来 from outside --
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细菌来自外部,
09:35
but when it's your own拥有 tissue组织 that you've grown长大的,
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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整个 different不同 thing."
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这是完全不同的一回事儿。
09:39
And I went through通过 a mental心理 exercise行使 actually其实,
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我其实经历过了一次精神上的锻炼,
09:42
because I started开始 a patient患者 support支持 community社区 of my own拥有
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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网站,
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病人互助的社区。
09:47
and one of my friends朋友, one of my relatives亲戚们 actually其实,
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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戴夫, who grew成长 this thing?
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说,看Dave谁说长这个东西?
09:53
Are you going to set yourself你自己 up
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你想要在精神上攻击你自己
09:55
as mentally精神上 attacking进攻 yourself你自己?"
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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故事 of how all that happens发生 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无论如何, this is the way the numbers数字 unfolded展开.
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无论如何,这是这些数字如何被发现的。
10:04
Me being存在 me, I put the numbers数字 from my hospital's医院 website网站
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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大小 into a spreadsheet电子表格.
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转到电子表格里。
10:09
Don't worry担心 about the numbers数字.
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别在意这些数字。
10:11
You see, that's the immune免疫的 system系统.
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你们看,这是免疫系统。
10:13
Amazing惊人 thing, those two yellow黄色 lines线
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这奇妙的两条黄线,
10:15
are where I got the two doses剂量 of interleukin白细胞介素
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就是我注射两剂白介素的地方。
10:17
two months个月 apart距离.
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两个月以后,
10:19
And look at how the tumor sizes大小 plummeted暴跌 in between之间.
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再看肿瘤大小是如何迅速减少的
10:22
Just incredible难以置信.
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简直是难以置信。
10:24
Who knows知道 what we'll be able能够 to do when we learn学习 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冲床 line线 is that a year and a half later后来,
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关键是,一年半以后,
10:30
I was there when this magnificent华丽的 young年轻 woman女人, my daughter女儿,
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在这个美丽的年轻女人,我的女儿,
10:33
got married已婚.
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结婚的时候,我出现了在现场。
10:35
And when she came来了 down those steps脚步,
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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时刻,
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那一刻好像只有我和她。
10:40
I was so glad高兴 that she didn't have to say to her mother母亲,
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我真是高兴她不用和她母亲说,
10:43
"I wish希望 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健康 care关心 better.
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为了使医疗事业更好。
10:49
Now I want to talk briefly简要地 about a couple一对 of other patients耐心
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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功率 to improve提高 health健康 care关心.
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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里贾纳 Holliday霍利迪,
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这是Regina Holliday.
10:57
a painter画家 in Washington华盛顿 D.C.,
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一位华盛顿的画家。
10:59
whose谁的 husband丈夫 died死亡 of kidney cancer癌症 a year after my disease疾病.
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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绘画 here a mural壁画
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她在这儿画了一幅壁画,
11:04
of his horrible可怕 final最后 weeks in the hospital醫院.
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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发现
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她发现的事情之一是
11:09
was that her husband's丈夫 medical record记录
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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杂乱无章.
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乱七八糟的放着。
11:15
And she thought, "You know, if I have a nutrition营养 facts事实 label标签
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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谷类 box,
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营养信息的标签。
11:20
why can't there be something that simple简单
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为什么不能有一种简单的方法
11:22
telling告诉 every一切 new nurse护士 who comes on duty义务,
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告诉每一个新来值班的护士,
11:24
every一切 new doctor医生,
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每一个新的医生,
11:26
the basics基本 about my husband's丈夫 condition条件?"
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我丈夫病情的基本情况。
11:28
So she painted this medical facts事实 mural壁画
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于是她把这些医疗状况画成了壁画,
11:30
with a nutrition营养 label标签,
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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研究 health健康 care关心 like me.
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她像我一样演技医疗事业。
11:41
She came来了 to realize实现 that there were a lot of people
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她意识到有很多人,
11:43
who'd谁愿意 written书面 patient患者 advocate主张 books图书
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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会议.
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但你们就是在医学会议上听不到这些书。
11:48
Patients耐心 are such这样 an underutilized未充分利用 resource资源.
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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介绍,
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就像我在开头介绍里说到,
11:54
I've gotten得到 somewhat有些 known已知 for saying that patients耐心 should have access访问 to their data数据.
295
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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其实 said at one conference会议 a couple一对 of years年份 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该死的 data数据,
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给我该死的数据,
12:02
because you people can't be trusted信任 to keep it clean清洁."
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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该死 data数据 --
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听她有我们该死的数据。
12:07
it's a pun双关语 --
300
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这有一个寓意(指上面提到的壁画)
12:09
which哪一个 is starting开始 to break打破 out, starting开始 to break打破 through通过 --
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它开始涌出,开始突破。
12:11
the water symbolizes象征着 our data数据.
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水就象征着我们的数据。
12:14
And in fact事实, I want to do a little something improvisational即兴 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推特 that I know,
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在Twitter上我认识一个人,
12:19
a health健康 IT guy outside Boston波士顿,
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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-PatientE-患者 rap敲击.
306
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3000
他写了一首饶舌歌,
12:24
And it goes like this.
307
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3000
是这样唱得,
12:32
Gimme给我 my damn该死的 data数据
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♫给我该死的数据,♫
12:34
♫ I want to be an e-PatientE-患者 just like Dave戴夫
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♫我想要成为一个e-病人就像Dave,♫
12:36
Gimme给我 my damn该死的 data数据, cuz的Cuz it's my life to save保存
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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进一步.
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我跑题得远了。
12:41
(Applause掌声)
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(掌声)
12:55
Well thank you. That shot射击 the timing定时.
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谢谢你们,时间刚刚好。
12:58
(Laughter笑声)
314
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(笑声)
13:00
Think about the possibility可能性,
315
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想想这个可能性,
13:02
why is it that iPhonesiPhone手机 and iPads解锁iPhone和iPad
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为什么iPhone和iPad要
13:04
advance提前 far faster更快
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发展得快得多
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than the health健康 tools工具 that are available可得到 to you
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比那些你能够让你用来
13:08
to help take care关心 of your family家庭?
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照顾你家庭的医疗器具
13:10
Here's这里的 a website网站, VisibleBodyVisibleBody.comCOM,
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这有一个网站,VisibleBody.com
13:12
that I stumbled迷迷糊糊 across横过.
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我偶尔会访问,
13:14
And I thought, "You know, I wonder奇迹 what my soleus比目鱼 muscle肌肉 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点击 on things and remove去掉 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比目鱼 muscle肌肉."
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我发现,哈,这是肾脏,这是比目鱼肌。
13:22
And I was rotating旋转 it in 3D
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我在3D的模式下旋转,
13:24
and saying, "I understand理解 now."
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说到,我现在了解了。
13:26
And then I realized实现 it reminded提醒 me of Google谷歌 Earth地球,
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这让我想到Google Earth,
13:29
where you can fly to any address地址.
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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数字 scan扫描 data数据
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和我的数码扫描数据联在一起,
13:37
and have Google谷歌 Earth地球 for my body身体?"
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为我的身体造一个Google Earth?
13:40
What did Google谷歌 come out with this year?
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Google今年推出了什么?
13:42
Now there's Google谷歌 Body身体 browser浏览器.
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现在有Google 身体浏览器
13:45
But you see, it's still generic通用.
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但你可以看到,它仍然是泛泛的
13:47
It's not my data数据.
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不是我自己的数据。
13:49
But if we can get that data数据 out from behind背后 the dam
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但是如果你能把数据从坝后面弄出来,
13:52
so software软件 innovators创新 can pounce猛扑 on it,
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软件开发师能在这些数据上改造,
13:55
the way software软件 innovators创新 like to do,
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就像软件开发师喜欢做得那样。
13:57
who knows知道 what we'll be able能够 to come up with.
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谁知道我能想出什么。
13:59
One final最后 story故事: this is Kelly黄绿色 Young年轻,
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最后一个故事:这是Kelly Young.
14:01
a rheumatoid类风湿 arthritis关节炎 patient患者
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一个类风湿性关节炎的患者。
14:03
from Florida佛罗里达.
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她来自佛罗里达。
14:05
This is a live生活 story故事
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这是一个正在发生的故事。
14:07
unfolding展开 just in the last few少数 weeks.
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就在最近几个星期展开。
14:09
RARA patients耐心, as they call themselves他们自己 --
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类风病人,他们这样称呼自己
14:12
her blog博客 is RARA Warrior战士 --
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她的博客叫类风勇士-
14:14
have a big problem问题
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有一个很大的问题。
14:16
because 40 percent百分 of them have no visible可见 symptoms症状.
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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品牌 it just really hard to tell how the disease疾病 is going.
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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医生 think, "Yeah right, you're really in pain疼痛."
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有些医生会觉得,是啊,你真的很痛。
14:25
Well she found发现, through通过 her online线上 research研究,
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但是她通过网上的研究发现,
14:28
a nuclear bone scan扫描
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一种核子骨扫描
14:30
that's usually平时 used for cancer癌症,
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它通常用在癌症诊断上,
14:32
but it can also reveal揭示 inflammation.
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但它也能够发现炎症。
14:34
And she saw
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她发现
14:36
that if there is no inflammation
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如果没有炎症,
14:38
then the scan扫描 is a uniform制服 gray灰色.
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扫描是一致的灰色。
14:41
So she took it.
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所以她做了一次扫描。
14:43
And the radiologist放射科医生 report报告 said, "No cancer癌症 found发现."
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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应该 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医生 fired解雇 her.
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医生不干了。
14:53
She pulled up the CD光盘.
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她找出CD.
14:55
He said, "If you don't want to follow跟随 my instructions说明,
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他说,如果你不想遵守我的指导
14:57
go away."
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就走开。
14:59
So she pulled up the CD光盘 of the scan扫描 images图片,
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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斑点.
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查看所有那些重要的位点。
15:04
And she's now actively积极地 engaged订婚 on her blog博客
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现在她活跃在她的博客上
15:07
in looking for assistance帮助 in getting得到 better care关心.
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寻求帮助来获得更好的治疗。
15:10
See, that is an empowered授权 patient患者 -- no medical training训练.
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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未被充分利用 resource资源 in health健康 care关心.
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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能够 to do
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她能做这些
15:20
was because she had access访问 to the raw生的 data数据.
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是因为她能拿到原始的数据。
15:22
How big a deal合同 was this?
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这个是多大的一个问题?
15:24
Well at TEDTED2009,
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在TED2009上,
15:26
Tim蒂姆 Berners-Lee伯纳斯 - 李 himself他自己, inventor发明者 of the Web卷筒纸, 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下一个 big thing
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他说下一个重要的发展
15:32
is not to have your browser浏览器 go out
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不是用你的浏览器
15:34
and find other people's人们 articles用品 about the data数据,
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来找到关于这些数据的文章,
15:36
but the raw生的 data数据.
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而是真的真正的原始数据。
15:38
And he got them chanting诵经 by the end结束 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生的 data数据 now.
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现在就要原始数据
15:42
Raw生的 data数据 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提高 health健康 care关心:
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三个词,为了改善医疗事业,
15:49
let patients耐心 help.
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让 病人 出份力
15:51
Let patients耐心 help.
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让 病人 出份力
15:53
Let patients耐心 help.
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让 病人 出份力
15:55
Let patients耐心 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掌声)
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(掌声)
16:15
For all the patients耐心 around the world世界
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对全世界各地
16:18
watching观看 this on the webcast网络直播,
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观看这个网络视频的病人们:
16:20
God bless保佑 you, everyone大家 -- let patients耐心 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主办: And bless保佑 yourself你自己. Thank you very much.
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主持人:也保佑你自己。非常感谢你。
Translated by Peng Zhang
Reviewed by Felix Chen

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ABOUT THE SPEAKER
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.

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.

More profile about the speaker
Dave deBronkart | Speaker | TED.com