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譯者: Vicky Chen
審譯者: Chien-Ping 洪健彬 Hung
太神奇了,我們能在這裡談談
00:16
It's an amazing thing
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00:17
that we're here to talk
about the year of patients rising.
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病人崛起年。
稍早你們已經聽過
00:22
You heard stories earlier today
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有些病人現在能掌控住自己的病情
00:24
about patients who are taking
control of their cases,
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有些病人說:你知道嗎,我知道我有多小的機會,
00:27
patients who are saying,
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00:28
"You know what, I know what the odds are,
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但我要去找尋更多資訊
00:30
but I'm going to look
for more information.
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我將要闡述
00:32
I'm going to define
what the terms of my success are."
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我自己的成功
我即將和你們分享
00:36
I'm going to be sharing with you
how, four years ago, I almost died --
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我如何在四年前幾乎要死掉時
發現我其實
00:40
found out I was, in fact,
already almost dead --
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已經幾乎死了
00:42
and what I then found out
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在那時我也發現所謂的e-病人運動--
00:45
about what's called
the e-Patient movement.
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我等會解釋我所謂的成功是什麼
00:47
I'll explain what that term means.
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我一直以病人戴維的稱號寫部落格
00:49
I had been blogging
under the name "Patient Dave,"
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00:51
and when I discovered this,
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當我發現這樣的事情之後 (e-病人)
00:53
I just renamed myself e-Patient Dave.
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我就改名為e-病人戴維
00:55
Regarding the word "patient":
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關於「病人」這個字,
00:57
When I first started a few years ago
getting involved in health care
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當我幾年前一開始
參與健康關懷
01:01
and attending meetings
as just a casual observer,
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以一個非正式的觀察者參加會議時
我注意到人們談論到病人的感覺
01:04
I noticed that people
would talk about patients
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好像這個人不在現場似的
01:06
as if it was somebody
who's not in the room here --
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01:08
somebody out there.
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是某個事不關己的人
01:10
Some of our talks today,
we still act like that.
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今天某些演講還是用這種態度
01:12
But I'm here to tell you:
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但我要告訴你們
01:14
"patient" is not a third-person word.
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病人並不是一個第三者
01:18
All right?
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你自己
01:19
You yourself will find
yourself in a hospital bed --
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有天也會躺在醫院裡
01:22
or your mother, your child --
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或者你的母親和小孩
01:24
there are heads nodding, people who say,
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有些人在點頭說「沒錯,我感同身受。」
01:26
"Yes, I know exactly what you mean."
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01:27
So when you hear what I'm going
to talk about here today,
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所以當你聽到我今天要談論的
首先,我想要說
01:31
first of all, I want to say that I am here
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我僅代表
01:34
on behalf of all the patients
that I have ever met,
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所有我遇過的
01:36
all the ones I haven't met.
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以及我未曾遇過的病人
01:38
This is about letting patients
play a more active role
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為了讓病人們扮演一個更積極的角色
在幫助及修復健康關懷方面
01:42
in helping health care,
in fixing health care.
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在我醫院裡的一個前輩醫生
01:45
One of the senior doctors at my hospital,
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Charlie Safran以及他的同事Warner Slack
01:47
Charlie Safran,
and his colleague, Warner Slack,
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01:49
have been saying for decades
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數十年來一直宣導的
01:51
that the most underutilized
resource in all of health care
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在所有健康關懷的資源裡最沒有被充分利用的
就是病人
01:55
is the patient.
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01:56
They have been saying that
since the 1970s.
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他們從1970年代就一直再宣導這個
01:59
Now, I'm going to step back in history.
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現在我要重回歷史
02:01
This is from July, 1969.
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在1969年的7月
02:03
I was a freshman in college,
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我那時是大學新鮮人
02:05
and this was when we first
landed on the Moon.
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那時也是人類第一次登陸地球
那是第一次
02:08
And it was the first time
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02:09
we had ever seen from another surface --
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我們得以從另一個地表看地球
就是你和我現在的所在
02:12
that's the place
where you and I are right now,
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我們住的地方
02:14
where we live.
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02:15
The world was changing.
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當時那個世界正在改變
02:17
It was about to change
in ways that nobody could foresee.
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它即將以無人能預知的方式改變
02:20
A few weeks later, Woodstock happened.
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幾個星期後
伍德斯托克音樂節發生了
02:24
Three days of fun and music.
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整整三天的音樂和樂趣
02:26
Here, just for historical authenticity,
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為了考據這歷史的真實性
02:28
is a picture of me in that year.
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這有一張我當年的照片
02:30
(Laughter)
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(笑聲)
02:33
Yeah, the wavy hair, the blue eyes --
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對,波浪捲和藍眼睛
02:35
it was really something.
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蠻酷的
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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美國次文化期刊發行了
02:41
It was a hippie journal
of self-sufficiency.
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它是一本自給自足的嬉皮雜誌
我們以為嬉皮只是享樂主義者
02:45
We think of hippies
of being just hedonists,
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但其中有一個很重要的元素,我自己參與過那一場運動
02:48
but there's a very strong component --
I was in that movement --
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一個很重要的元素
02:51
a very strong component
of being responsible for yourself.
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就是對自己負責
02:54
This book's title's subtitle
is "Access to Tools."
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這本書標題中的副標題
是接近工具
02:58
It talked about how to build
your own house,
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它談論到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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如何栽種自己的食物和所有其他東西
在1980年代
03:03
In the 1980s,
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03:04
this young doctor, Tom Ferguson,
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醫生Tom Ferguson
03:06
was the medical editor
of the Whole Earth Catalog.
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是美國次文化期刊的醫療編輯
03:09
He saw that the great majority
of what we do in medicine and health care
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他發現大部分
我們在醫藥和健康醫護上
主要是照顧我們自己
03:14
is taking care of ourselves.
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事實上,他說是有百分之七十至八十
03:16
In fact, he said it was 70 to 80 percent
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03:18
of how we actually
take care of our bodies.
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我們真正照顧自己的身體
03:20
Well, he also saw that when health care
turns to medical care
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而且他也看到
當健康關懷轉到醫療關懷時
03:25
because of a more serious disease,
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因為一個更嚴重的疾病
03:27
the key thing that holds us back
is access to information.
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主要阻止我們的是資料的取得性
03:30
And when the Web came along,
that changed everything,
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當網路時代來臨時,一切都改變了
因為不只我們能找到資訊
03:34
because not only
could we find information,
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03:36
we could find other people like ourselves
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我們也能找到有相同狀況的病人
03:39
who could gather,
who could bring us information.
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可以聚在一起,互相提供資訊
他可以加入e-病人的行列
03:42
And he coined this term "e-Patients" --
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03:44
equipped, engaged, empowered, enabled.
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有裝備,能專心一致,賦予力量,有能力了
03:47
Obviously, at this stage of life
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明顯地,在此人生階段
03:48
he was in a somewhat more dignified
form than he was back then.
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他比之前更有尊嚴
03:52
Now, I was an engaged patient
long before I ever heard of the term.
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我是一個專心從事此工作的病人
而且早在我聽過這個專有名詞之前
03:56
In 2006, I went to my doctor
for a regular physical,
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2006年時,我為了一個例行檢查去看醫生
03:59
and I had said, "I have a sore shoulder."
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我說我肩膀痠痛
然後就照了X光
04:02
Well, I got an X-ray,
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04:03
and the next morning --
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隔天早上
04:05
you may have noticed, those of you
who have been through a medical crisis
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你可能已經發現,尤其是你們之中曾經經歷醫療危機的人
就能體會
04:08
will understand this.
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這個早晨,有些講者
04:10
This morning, some of the speakers
named the date when they found out
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把發現病情狀況的日期時間表明出來
04:14
about their condition.
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04:15
For me, it was 9am
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我的是早上9點
04:18
on January 3, 2007.
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2007年,1月3日
我在辦公室裡,桌上很乾淨
04:21
I was at the office; my desk was clean.
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牆上有藍色的隔間毯
04:23
I had the blue partition
carpet on the walls.
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電話響了,是我的醫生打的
04:27
The phone rang and it was my doctor.
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他說,戴維,我把X光片拉開
04:30
He said, "Dave, I pulled
up the X-ray image
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放在家裡的電腦螢幕上
04:33
on the screen on the computer at home."
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他說,你的肩膀沒事
04:35
He said, "Your shoulder
is going to be fine,
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但是戴維你的肺裡有東西
04:37
but Dave, there's something in your lung."
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如果你看一下那個紅色橢圓物
04:39
And if you look in that red oval,
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那邊不應該有那種陰影物
04:41
that shadow was not supposed to be there.
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長話短說
04:45
To make a long story short,
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所以我得回去醫院嗎?
04:47
I said, "So you need me
to get back in there?"
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他說,是,我們需要幫你的胸部做個電腦斷層掃描
04:49
He said, "Yeah, we're going to need
to do a CT scan of your chest."
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而且告別前我說"我應該做什麼嗎?"
04:52
In parting, I said,
"Is there anything I should do?"
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他說,考慮一下這個
04:55
He said -- think about this one,
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這是你的醫生的良心建議
04:57
this is the advice your doctor gives you:
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回家和你老婆喝杯酒吧
04:59
"Just go home and have a glass
of wine with your wife."
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我進去做電腦斷層掃描
05:04
I went in for the CAT scan.
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05:07
It turns out there were
five of these things in both my lungs.
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結果我兩邊的肺部總共有五個這些東西
05:10
So at that point we knew
that it was cancer.
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所以那時我們就知道那是癌症
05:12
We knew it wasn't lung cancer.
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我們知道那不是肺癌
05:14
That meant it was metastasized
from somewhere.
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它是從別處轉移過來的
問題是從哪裡來?
05:18
The question was, where from?
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05:20
So I went in for an ultrasound.
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所以我去照了超音波
我必須做很多女人做的一樣
05:23
I got to do what many women have --
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05:25
the jelly on the belly and the, "Bzzzz!"
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在腹部上塗上膠凍然後滋滋...
我老婆和我一起去的
05:29
My wife came with me.
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他是一個獸醫
05:31
She's a veterinarian,
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05:32
so she's seen lots of ultrasounds.
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所以她看了很多超音波
05:34
I mean, she knows I'm not a dog.
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我的意思是他知道我不是隻狗
05:36
(Laughter)
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05:37
This is an MRI image.
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但是我們看到的,這是個核磁共振攝影
05:40
This is much sharper
than an ultrasound would be.
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這筆超音波清楚多了
我們在腎臟裡看到的
05:43
What we saw in that kidney
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是那邊的球狀物
05:46
was that big blob there.
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而且實際上還有兩個
05:47
There were actually two of these:
one was growing out the front
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一個長在前面,而且已經爆發
05:50
and had already erupted
and latched onto the bowel.
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深藏在腸子裡
一個長在背面,黏在比目魚肌上
05:53
One was growing out the back
and it attached to the psoas muscle,
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這是一個我未曾聽聞的背部大肌肉
05:56
which is a big muscle in the back
that I'd never heard of,
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但是突然間我在意起它來
05:59
but all of a sudden I cared about it.
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06:01
(Laughter)
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我回家
06:02
I went home.
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06:03
Now, I've been Googling --
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我一直在網路上搜詢資料,自從1989年起我就透過Compuserve上網
06:04
I've been online since 1989,
on CompuServe.
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我回家去,我知道不能在這裡讀到詳細資訊
06:07
I went home, and I know
you can't read the details here;
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那不重要
06:09
that's not important.
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06:10
My point is, I went to a respected
medical website, WebMD,
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我的重點是我去了一間很受尊重的醫學網站
WebMD
因為我知道如何過濾垃圾訊息
06:15
because I know how to filter out junk.
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06:17
I also found my wife online.
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我也在網路上找到老婆
06:19
Before I met her,
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遇到她之前
06:21
I went through some suboptimal
search results.
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我瀏覽了一些未達理想的搜尋結果
(笑聲)
06:24
(Laughter)
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06:25
So I looked for quality information.
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所以我尋找有品質的資訊
06:28
There's so much about trust --
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這跟信任有很大的關係
06:30
what sources of information can we trust?
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我們能信任什麼樣的來源的資訊呢
我的身體極限在哪裡
06:33
Where does my body end
and an invader start?
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侵略者從何開始
06:37
A cancer, a tumor, is something
you grow out of your own tissue.
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癌症和腫瘤是從你自己的組織長出來的
那是如何發生的?
06:41
How does that happen?
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06:42
Where does medical ability end and start?
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醫療的能耐從哪裡
結束和開始?
06:46
Well, so what I read on WebMD:
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所以我從WebMD讀到
病情結果預測不好
06:49
"The prognosis is poor
for progressing renal cell cancer.
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對進行中的腎組織癌症來說
幾乎大部分的病人都是無法治癒的
06:54
Almost all patients are incurable."
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我的網路經驗多到知道
06:57
I've been online long enough to know
if I don't like the first results I get,
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如果我不喜歡第一個搜尋結果
我就繼續找更多
07:01
I go look for more.
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07:02
And what I found on other websites was,
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而我找到的是在另一個網站
07:05
even by the third page of Google results:
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還是在Google搜尋的第三頁裡
07:07
"Outlook is bleak."
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前景堪慮
07:09
"Prognosis is grim."
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病情預測嚴酷
但我卻在想著,搞什麼鬼
07:12
And I'm thinking, "What the heck?"
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我一點也不覺得病了
07:14
I didn't feel sick at all.
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我意思是說,我晚上會感到累
07:16
I mean, I'd been getting
tired in the evening,
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但我已經五十歲了啊
07:18
but I was 56 years old, you know?
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我的體重慢慢下降
07:20
I was slowly losing weight,
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但是對我來說,是醫生叫我這樣做的
07:22
but for me, that was what
the doctor told me to do.
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這真是很酷
07:26
It was really something.
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07:27
And this is the diagram
of stage 4 kidney cancer
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這是腎臟癌第四期的圖表
最終我終於從我吃的藥得到
07:31
from the drug I eventually got.
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07:32
Totally by coincidence,
there's that thing in my lung.
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完全是巧合,在我肺裡有那東西
在左邊的股骨,左邊的大腿骨,有另一個
07:36
In the left femur, the left thigh bone,
there's another one.
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我曾經有過一個,我的腿最後斷裂了
07:39
I had one. My leg eventually snapped.
175
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我昏倒然後倒在腳上,然後就斷了
07:41
I fainted and landed on it, and it broke.
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頭骨裡也有一個
07:44
There's one in the skull,
177
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1248
07:45
and then for good measure,
I had these other tumors,
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然後為了好的測量,我還有其他腫瘤
包括在內,就在我的治療開始時
07:48
including, by the time
my treatment started,
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我的舌頭長出了一個
07:50
one was growing out of my tongue.
180
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1589
07:51
I had kidney cancer
growing out of my tongue.
181
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2144
我的舌頭長出了腎臟瘤
07:53
And what I read
182
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1159
我讀到的剩下的日子
07:55
was that my median survival was 24 weeks.
183
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2388
是24周
這真糟
07:58
This was bad.
184
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1455
07:59
I was facing the grave.
185
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1796
我快死了
08:02
I thought, "What's my mother's face
going to look like
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2574
我想,我媽到時候看起來會如何
08:04
on the day of my funeral?"
187
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1310
在我的喪禮那天
08:06
I had to sit down with my daughter
and say, "Here's the situation."
188
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5485
我必須和我女兒坐下來
說「情況是這樣」
她男友和她一起
08:12
Her boyfriend was with her.
189
492114
1414
08:13
I said, "I don't want you guys
to get married prematurely,
190
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2801
我說我不希望你們太早結婚
08:16
just so you can do it
while Dad's still alive."
191
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2782
只是希望你們能在爸爸還在時結婚
這真的很嚴肅
08:20
It's really serious.
192
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1569
08:21
If you wonder why patients
are motivated and want to help,
193
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因為如果你覺得奇怪為什麼病人會主動幫忙
這樣想吧
08:25
think about this.
194
505536
1158
08:26
Well, my doctor prescribed
a patient community, ACOR.org,
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4030
我的醫生開給我的處方是一個病人社群
Acor組織網站
08:30
a network of cancer patients,
of all amazing things.
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510772
3214
一個有著各種好東西的癌症病人網站
他們很快地告訴我
08:34
Very quickly they told me,
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514010
1976
腎臟癌是一個罕見的疾病
08:36
"Kidney cancer is an uncommon disease.
198
516010
1976
趕快去找一個專家中心
08:38
Get yourself to a specialist center.
199
518010
1977
雖然沒有治癒方法,但是有時候還是有些有用的東西--
08:40
There is no cure, but there's something
that sometimes works --
200
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2999
通常是沒用的--
08:43
it usually doesn't --
201
523034
1556
08:44
called high-dosage interleukin.
202
524614
1814
叫做高劑量白細胞介素
08:46
Most hospitals don't offer it,
203
526452
2008
大部分醫院沒有提供
08:48
so they won't even tell you it exists.
204
528484
2175
所以他們甚至不會告訴你有這種東西
08:50
Don't let them give you
anything else first.
205
530683
2119
而且不要讓他們先給你任何其他東西
08:52
And by the way, here are four doctors
in your part of the United States
206
532826
3373
順道一提,有四個醫生
在你住的美國區域裡,他們提供這種藥還有他們的電話
08:56
who offer it, and their phone numbers."
207
536223
1951
是不是很棒?
08:58
How amazing is that?
208
538198
2438
(鼓掌)
09:00
(Applause)
209
540660
2814
問題是
09:03
Here's the thing:
210
543498
1196
09:04
Here we are, four years later --
211
544718
1588
四年後的現在
09:06
you can't find a website
that gives patients that information.
212
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3576
你找不到提供病人這個訊息的網站
09:09
Government-approved,
American Cancer Society,
213
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2533
政府核准的,美國癌症社群
09:12
but patients know
what patients want to know.
214
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2976
但是病人知道病人想知道的
這是病人網絡的力量
09:16
It's the power of patient networks.
215
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2771
09:18
This amazing substance --
again, I mentioned:
216
558889
3229
這個驚人實體
再提到我之前說過的,我的身體的極限在哪裡?
09:22
Where does my body end?
217
562142
1354
09:23
My oncologist and I talk a lot these days
218
563520
2394
這些日子以來,我的腫瘤學家和我談了很多。
09:25
because I try to keep my talks
technically accurate.
219
565938
2501
因為我試著讓我的演講技術上是正確的
他說,你知道吧,免疫系統
09:28
And he said, "You know, the immune
system is good at detecting invaders,
220
568463
4328
很擅長偵測入侵者
細菌是從外面來的
09:33
bacteria coming from outside,
221
573537
2317
09:35
but when it's your own tissue
that you've grown,
222
575878
2474
但如果長得是自己的身體組織
那就完全是另一回事了
09:38
it's a whole different thing."
223
578376
1519
09:39
And I went through
a mental exercise, actually,
224
579919
2956
實際上我經歷了一場心理運動
09:42
because I started a patient support
community of my own on a website,
225
582899
4818
因為我自己開了一個病人支持社群
在一個網站上
09:47
and one of my friends --
one of my relatives, actually -- said,
226
587741
3034
然後我一個朋友,事實上是我一個親戚
說,戴維,是誰長了這些東西?
09:50
"Look, Dave, who grew this thing?
227
590799
1750
你要設陷阱給自己嗎?
09:54
Are you going to set yourself up
as mentally attacking yourself?"
228
594154
4023
用心理戰打自己
所以我們開始討論它
09:58
So we went into it.
229
598201
1604
09:59
The story of how all that
happened is in the book.
230
599829
2717
這些如何發生的故事都在這本書裡
10:02
Anyway, this is the way
the numbers unfolded.
231
602570
2424
總之,這些數字呈現出來的就是這樣
為了做自己,我把我的醫院網站上的數字
10:05
Me being me, I put the numbers
from my hospital's website,
232
605018
3131
我的腫瘤大小數字做成一個電子表格
10:08
for my tumor sizes,
233
608173
1159
10:09
into a spreadsheet.
234
609356
1151
別管那些數字
10:10
Don't worry about the numbers.
235
610531
1455
你看,那是免疫系統
10:12
You see, that's the immune system.
236
612010
1752
10:13
Amazing thing, those two yellow lines
237
613786
1977
驚人的是,那兩條黃色線
10:15
are where I got the two doses
of interleukin two months apart.
238
615787
4199
是我注射了兩劑量的白細胞介素
兩個月後
你看腫瘤的大小在期間急速縮小了
10:20
And look at how the tumor sizes
plummeted in between.
239
620010
3130
真是令人難以置信
10:23
Just incredible.
240
623164
1459
10:24
Who knows what we'll be able to do
when we learn to make more use of it?
241
624647
3430
誰知道如果我們學會多利用它會讓我們能夠做到什麼
關鍵句就是一年半後
10:28
The punch line is that a year
and a half later,
242
628101
2316
10:30
I was there when this magnificent
young woman, my daughter,
243
630441
4300
我當時在場,當我的女兒,這個年輕優秀的女人
結婚時
10:34
got married.
244
634765
1163
10:35
And when she came down those steps,
245
635952
1811
當她走下那些台階時
10:38
and it was just her and me
for that moment,
246
638351
2230
當時只有她和我
10:40
I was so glad that she didn't have
to say to her mother,
247
640605
3222
我好欣慰她不必和她母親說
10:43
"I wish Dad could have been here."
248
643851
2056
我好希望父親能在這裡
10:45
And this is what we're doing
when we make health care better.
249
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3880
這就是我們在做的
當我們使健康關懷更好時
10:49
Now, I want to talk briefly
about a couple of other patients
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649835
2903
現在我要簡單談一下幾個其他病人
10:52
who are doing everything
in their power to improve health care.
251
652762
3009
他們盡所能再改進健康關懷
10:55
This is Regina Holliday,
252
655795
1639
這位是Regina Holliday
10:57
a painter in Washington DC,
whose husband died of kidney cancer
253
657458
4199
住在華盛頓的病人
在我疾病發生後一年死於腎臟癌
11:01
a year after my disease.
254
661681
1500
她在這裡畫了一個壁畫
11:03
She's painting, here, a mural
255
663205
1781
有關她先生在醫院的最後幾個禮拜
11:05
of his horrible
final weeks in the hospital.
256
665010
2976
她發現其中一件事
11:08
One of the things that she discovered
257
668010
2447
就是她的先生的醫療紀錄
11:10
was that her husband's medical record
in this paper folder
258
670481
4284
在這個文件資料夾裡
雜亂無章
11:14
was just disorganized.
259
674789
1526
然後她這樣想,如果我有一個營養標籤
11:16
And she thought, "You know,
if I have a nutrition facts label
260
676339
3265
在麥片盒側邊
11:19
on the side of a cereal box,
261
679628
1723
那為什麼不能有某個簡單的東西
11:21
why can't there be something that simple
262
681375
1955
可以告訴每個值勤的新護士
11:23
telling every new nurse who comes on duty,
263
683354
2544
每個新醫生
11:25
every new doctor,
264
685922
1225
有關我先生狀況的基本資料呢?
11:27
the basics about my husband's condition?"
265
687171
2110
所以她畫了這個醫學事實壁畫
11:29
So she painted this medical facts mural
with a nutrition label,
266
689305
5276
用一個營養標籤
某個像這樣的東西
11:34
something like that,
267
694605
1157
圖解她先生的狀況
11:35
in a diagram of him.
268
695786
1200
去年,她畫了這個圖表
11:37
She then, last year, painted this diagram.
269
697010
2976
她也和我一樣研究健康關懷
11:40
She studied health care like me.
270
700010
1884
11:41
She came to realize
there were a lot of people
271
701918
2436
她慢慢知道有很多人
在寫擁護病人的書
11:44
who'd written patient-advocate books
272
704378
2010
在醫學會議裡是不會聽到的
11:46
that you just don't hear
about at medical conferences.
273
706412
2843
病人是多麼不被充分利用的資源啊
11:49
Patients are such
an underutilized resource.
274
709279
2755
11:52
Well, as it said in my introduction,
275
712939
1725
就像我在介紹裡說的
11:54
I've gotten somewhat known for saying
276
714688
1782
我有資格說病人們應該有拿到他們資料的管道
11:56
that patients should have
access to their data.
277
716494
2207
實際上,幾年前我已經在一個會議裡說過了
11:58
I actually said at one conference
a couple of years ago,
278
718725
2676
把我的資料數據給我
12:01
"Give me my damn data,
279
721425
1163
12:02
because you people
can't be trusted to keep it clean."
280
722612
2603
因為你們沒辦法被信任能夠保持它的完整性
12:05
And here, she has our "damned" data --
281
725239
2747
聽到她有我們該死的資料數據
這是雙關語
12:08
it's a pun --
282
728010
1294
12:09
which is starting to break out,
starting to break through --
283
729328
2928
開始'要崩潰,衝破
水象徵我們的數據資料
12:12
the water symbolizes our data.
284
732280
2096
12:14
And in fact,
285
734400
1151
事實上,我想為你們做一些即興的事
12:15
I want to do a little something
improvisational for you.
286
735575
2704
我認識一個在推特上的男孩
12:18
There's a guy on Twitter that I know,
a health IT guy outside Boston,
287
738303
3869
一個住在波士頓外的健康工程師
他寫了一個e-病人饒舌歌
12:22
and he wrote the e-Patient rap.
288
742196
2532
12:24
And it goes like this.
289
744752
1698
是這樣唱的
12:26
(Laughter)
290
746474
1618
12:28
(Beatboxing)
291
748116
4060
12:32
(Rapping) Gimme my damn data
292
752200
2025
給我我該死的資料
12:34
I wanna be an e-Patient just like Dave
293
754249
2468
我想和戴福一樣做一個網路病人
12:36
Gimme my damn data,
'cause it's my life to save
294
756741
2536
給我該死的資料,因為要救就是我的生命
12:39
(Normal voice) Now, I'm not going
to go any further --
295
759301
2578
好了,我不唱下去了
12:41
(Applause) (Cheering)
296
761903
6531
(鼓掌)
謝謝,時間剛剛好
12:56
Well, thank you. That shot the timing.
297
776265
2405
12:58
(Laughter)
298
778694
1641
(掌聲)
13:00
Think about the possibility.
299
780359
1471
想想這個可能性
13:01
Why is it that iPhones and iPads
advance far faster
300
781854
4386
為什麼蘋果手機和電子書
先進的快多了
13:06
than the health tools
that are available to you
301
786264
2240
比起那些可以讓你使用的健康工具
13:08
to help take care of your family?
302
788528
2228
來幫助關懷家人
13:10
Here's a website, VisibleBody.com,
that I stumbled across.
303
790780
4120
這裡有個網站,可透視身體網站
我不小心看到
13:14
And I thought, "You know,
I wonder what my psoas muscle is?"
304
794924
2934
我想,你知道嗎?我在想我的比目魚肌長怎樣?
13:17
So you can click on things and remove it.
305
797882
1977
所以你可以點點看那個東西也可以移動它
13:19
And I saw, "Aha! That's the kidney
and the psoas muscle."
306
799883
2977
然後我看到了,喔!那就是腎臟和比目魚肌。
13:22
I was rotating it in 3D
and saying, "I understand now."
307
802884
3961
然後我把它用3D旋轉
然後說,我了解了。
13:26
And then I realized
it reminded me of Google Earth,
308
806869
2935
然後我領悟到它讓我想到Google地球
13:29
where you can fly to any address.
309
809828
2313
你可以像飛的一樣到任何地址
13:32
And I thought, "Why not take this
and connect it to my digital scan data
310
812605
5328
然後我想,為什麼不利用這個
然後連結到我的數位掃描資料
13:37
and have Google Earth for my body?"
311
817957
2284
然後創造出我身體的Google地球?
13:40
What did Google come out with this year?
312
820866
2120
今年Google發佈了什麼?
現在有Google身體瀏覽器
13:43
Now there's Google Body browser.
313
823010
2004
13:45
But you see, it's still generic.
314
825618
1977
不過他還是通用性的
13:47
It's not my data.
315
827619
1880
不是我的數據資料
13:49
But if we can get that data
out from behind the dam
316
829523
3074
但是如果我們可以從水壩後得到數據
13:52
so software innovators can pounce on it
317
832621
2977
所以軟體研發者可以抓住這個機會
13:55
the way software innovators like to do,
318
835622
2276
就像它們喜歡做的事一樣
13:57
who knows what we'll be able
to come up with.
319
837922
2186
誰知道我們能做出什麼來
最後一個故事,這位是Kelly Young
14:00
One final story.
320
840132
1151
14:01
This is Kelly Young, a rheumatoid
arthritis patient from Florida.
321
841307
4575
一個類風濕關節炎的病人
來自佛羅里達
這是一個真實故事
14:06
This is a live story,
unfolding just in the last few weeks.
322
846258
3519
在前幾個禮拜前才被發現
14:09
RA patients, as they call themselves --
her blog is "RA Warrior" --
323
849801
5544
RA病人,他們這樣稱呼自己--
她的部落格是RA戰士--
有一個大麻煩
14:15
have a big problem,
324
855369
1357
14:16
because 40 percent of them
have no visible symptoms.
325
856750
2778
因為他門之中有百分之40沒有明顯症狀
這讓人們很難能去判斷這個疾病的狀況
14:20
And that makes it really hard
to tell how the disease is going,
326
860010
3058
有些醫生認為,嗯,對!你真的很痛苦
14:23
and some doctors think,
"Yeah right, you're really in pain."
327
863092
3157
從她的網路上搜尋中,她發現
14:26
Well, she found,
through her online research,
328
866273
2713
一個核子骨頭掃描
14:29
a nuclear bone scan
that's usually used for cancer,
329
869010
3388
通常是用於癌症
14:32
but it can also reveal inflammation.
330
872422
2789
但也用來發現炎症
然後她了解
14:35
And she saw that
if there is no inflammation,
331
875235
3910
如果沒有發炎
那掃描結果會是整個灰色
14:39
then the scan is a uniform gray.
332
879169
2460
14:41
So she took it.
333
881653
1195
所以她做了掃描
14:42
And the radiologist's report
said, "No cancer found."
334
882872
4281
放射科醫生報告說,沒有發現癌症
但那不是他應該做的
14:47
Well, that's not what
he was supposed to do with it.
335
887177
2479
所以她又再次讓掃描結果被解讀一次,她想這麼做。
14:49
So she wanted to have it read again,
336
889680
2421
於是她的醫生開除了她
14:52
and her doctor fired her.
337
892125
1861
她把光碟拉出來
14:54
She pulled up the CD.
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14:55
He said, "If you don't want to follow
my instructions, go away."
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他說,如果你不遵照我的指示
就走開
所以她拉出掃描'影像的CD
15:00
So she pulled up the CD
of the scan images,
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看著那些熱點
15:03
and look at all those hot spots.
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現在她很積極地在寫部落格
15:05
And she's now actively engaged on her blog
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想尋找更好的護理協助
15:08
in looking for assistance
in getting better care.
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看吧,那是一個有力量的病人,沒有受過醫學訓練
15:11
See, that is an empowered
patient -- no medical training.
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我們,你們都是
15:14
We are, you are,
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在健康護理裡最不被充分利用的資源
15:16
the most underused
resource in health care.
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15:18
What she was able to do
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她之所以能做到這樣
15:20
was because she had access
to the raw data.
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是因為她能取得原始數據資料
這是多麼大的一件事啊?
15:23
How big a deal was this?
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15:24
Well at TED2009,
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在TED2009年
15:26
Tim Berners-Lee himself,
inventor of the Web,
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網路發明人Tim Berners-Lee他自己演講到
15:29
gave a talk where he said
the next big thing
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下一個大事件
15:32
is not to have your browser find
other people's articles about the data,
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不是去瀏覽網站
去發現他人有關數據資料的文章
而是有關原始資料
15:37
but the raw data.
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15:38
And he got them chanting
by the end of the talk,
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然後他讓大家在演講後一起口誦
現在就要原始資料
15:41
"Raw data now! Raw data now!"
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現在就要原始資料
我需要你這麼做
15:45
And I ask you,
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15:46
three words, please,
to improve health care:
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請說三個字來改進健康醫護
15:49
Let patients help!
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讓病人幫助病人
15:51
Let patients help!
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讓病人幫助病人
15:53
Let patients help!
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讓病人幫助病人
15:55
Let patients help!
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讓病人幫助病人
15:57
Thank you.
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謝謝
15:58
(Applause)
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(鼓掌)
16:15
For all the patients around the world
watching this on the Webcast,
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給所有全世界的病人
在網路上看著轉播的你們
16:20
God bless you, everyone.
Let patients help.
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願上帝保佑你,每一個人,讓病人幫助病人。
主持人: 願上帝也保佑你。非常謝謝你們。
16:23
Host: And bless yourself.
Thank you very much.
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