TEDxMaastricht
Dave deBronkart: Meet e-Patient Dave
戴維德博卡特：認識網e-病人戴維
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當戴維德博卡特得知他得了一種罕見癌症末期時，他轉向一群網路上的病人朋友們尋求幫助，並且找到了一種連他的醫生都不知道的治療方法，進而挽救了自己的生命。他呼籲所有病人彼此對話、了解自己的健康狀況資料、並讓健康醫護一次改善一個e-病人的狀況。
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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太神奇了，我們能在這裡談談
00:18
about the year of patients rising.
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病人崛起年。
00:21
You heard stories earlier today
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稍早你們已經聽過
00:23
about patients who are taking control of their cases,
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有些病人現在能掌控住自己的病情
00:26
patients who are saying, "You know what, I know what the odds are,
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有些病人說：你知道嗎，我知道我有多小的機會，
00:29
but I'm going to go look for more information.
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但我要去找尋更多資訊
00:31
I'm going to define
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我將要闡述
00:33
what the terms of my success are."
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我自己的成功
00:35
I'm going to be sharing with you
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我即將和你們分享
00:37
how four years ago I almost died --
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我如何在四年前幾乎要死掉時
00:39
found out I was, in fact,
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發現我其實
00:41
already almost dead.
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已經幾乎死了
00:43
And what I then found out about what's called the e-Patient movement --
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在那時我也發現所謂的e-病人運動--
00:46
I'll explain what that term means.
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我等會解釋我所謂的成功是什麼
00:48
I had been blogging under the name Patient Dave,
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我一直以病人戴維的稱號寫部落格
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
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當我幾年前一開始
00:59
getting involved in health care
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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
01:03
I noticed that people would talk about patients
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我注意到人們談論到病人的感覺
01:05
as if it was somebody who's not in the room here,
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好像這個人不在現場似的
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
You, yourself,
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你自己
01:20
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, "Yes, I know exactly what you mean."
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有些人在點頭說「沒錯，我感同身受。」
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
01:30
first of all, I want to say
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首先，我想要說
01:32
that I am here on behalf
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我僅代表
01:34
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
01:41
in helping health care, in fixing health care.
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在幫助及修復健康關懷方面
01:44
One of the senior doctors at my hospital,
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在我醫院裡的一個前輩醫生
01:46
Charlie Safran, and his colleague, Warner Slack,
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Charlie Safran以及他的同事Warner Slack
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
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
02:07
And it was the first time
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那是第一次
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
02:11
that's the place where you and I are right now,
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就是你和我現在的所在
02:13
where we live.
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我們住的地方
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,
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幾個星期後
02:22
Woodstock happened.
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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
02:44
We think of hippies of being just hedonists,
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我們以為嬉皮只是享樂主義者
02:47
but there's a very strong component -- I was in that movement --
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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
02:50
a very strong component
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一個很重要的元素
02:52
of being responsible for yourself.
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就是對自己負責
02:54
This book's title's subtitle
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這本書標題中的副標題
02:56
is: "Access to Tools."
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是接近工具
02:58
And 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
03:02
In the 1980s,
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在1980年代
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
And he saw that the great majority
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他發現大部分
03:11
of what we do in medicine and health care
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我們在醫藥和健康醫護上
03:13
is taking care of ourselves.
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主要是照顧我們自己
03:15
In fact, he said it was 70 to 80 percent
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事實上，他說是有百分之七十至八十
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
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而且他也看到
03:22
that when health care turns to medical care
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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
03:33
because not only could we find information,
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因為不只我們能找到資訊
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
03:41
And he coined this term e-Patients --
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他可以加入e-病人的行列
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
03:49
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
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我是一個專心從事此工作的病人
03:54
long before I ever heard of the term.
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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
04:01
Well, I got an X-ray,
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然後就照了X光
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
04:07
will understand this.
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就能體會
04:09
This morning, some of the speakers
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這個早晨，有些講者
04:11
named the date when they found out about their condition.
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把發現病情狀況的日期時間表明出來
04:15
For me, it was 9:00 AM
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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
04:20
I was at the office; my desk was clean;
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我在辦公室裡，桌上很乾淨
04:22
I had the blue partition carpet on the walls.
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牆上有藍色的隔間毯
04:26
The phone rang and it was my doctor.
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電話響了，是我的醫生打的
04:29
He said, "Dave, I pulled up the X-ray image
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他說，戴維，我把X光片拉開
04:32
on the screen on the computer at home."
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放在家裡的電腦螢幕上
04:34
He said, "Your shoulder's going to be fine,
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他說，你的肩膀沒事
04:36
but Dave, there's something in your lung."
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但是戴維你的肺裡有東西
04:38
And if you look in that red oval,
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如果你看一下那個紅色橢圓物
04:40
that shadow was not supposed to be there.
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那邊不應該有那種陰影物
04:44
To make a long story short,
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長話短說
04:46
I said, "So you need me to get back in there?"
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所以我得回去醫院嗎?
04:48
He said, "Yeah, we're going to need to do a CT scan of your chest."
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他說，是，我們需要幫你的胸部做個電腦斷層掃描
04:51
And in parting I said, "Is there anything I should do?"
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而且告別前我說"我應該做什麼嗎?"
04:54
He said -- think about this one.
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他說，考慮一下這個
04:56
This is the advice your doctor gives you:
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這是你的醫生的良心建議
04:58
"just go home and have a glass of wine with your wife."
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回家和你老婆喝杯酒吧
05:03
I went in for the CAT scan,
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我進去做電腦斷層掃描
05:07
and 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
05:17
The question was, where from?
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問題是從哪裡來?
05:20
So I went in for an ultrasound.
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所以我去照了超音波
05:22
I got to do what many women have --
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我必須做很多女人做的一樣
05:25
the jelly on the belly and bzzzz.
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在腹部上塗上膠凍然後滋滋...
05:28
My wife came with me.
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我老婆和我一起去的
05:30
She's a veterinarian,
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他是一個獸醫
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
05:37
But what we saw -- 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
05:42
What we saw in that kidney
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我們在腎臟裡看到的
05:44
was that big blob there.
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是那邊的球狀物
05:46
And there were actually two of these.
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而且實際上還有兩個
05:48
One was growing out the front and it had already erupted,
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一個長在前面，而且已經爆發
05:50
and it latched onto the bowel.
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深藏在腸子裡
05:52
One was growing out the back, and it attached to the soleus muscle,
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一個長在背面，黏在比目魚肌上
05:55
which is a big muscle in the back that I'd never heard of,
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這是一個我未曾聽聞的背部大肌肉
05:58
but all of a sudden I cared about it.
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但是突然間我在意起它來
06:01
I went home.
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我回家
06:03
Now I've been Googling -- I've been online since 1989 on CompuServe.
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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
06:06
I went home, and I know you can't read the details here;
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我回家去，我知道不能在這裡讀到詳細資訊
06:08
that's not important.
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那不重要
06:10
My point is I went to a respected medical website,
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我的重點是我去了一間很受尊重的醫學網站
06:12
WebMD,
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WebMD
06:14
because I know how to filter out junk.
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因為我知道如何過濾垃圾訊息
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
06:23
(Laughter)
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(笑聲)
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
06:32
Where does my body end
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我的身體極限在哪裡
06:35
and an invader start?
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侵略者從何開始
06:37
And 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
06:40
How does that happen?
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那是如何發生的?
06:42
Where does medical ability
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醫療的能耐從哪裡
06:44
end and start?
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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
06:48
"The prognosis is poor
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病情結果預測不好
06:51
for progressing renal cell cancer.
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對進行中的腎組織癌症來說
06:53
Almost all patients are incurable."
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幾乎大部分的病人都是無法治癒的
06:56
I've been online long enough to know
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我的網路經驗多到知道
06:58
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
07:00
I go look for more.
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我就繼續找更多
07:02
And what I found was on other websites,
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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
07:11
And I'm thinking, "What the heck?"
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但我卻在想著，搞什麼鬼
07:13
I didn't feel sick at all.
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我一點也不覺得病了
07:15
I mean, I'd been getting tired in the evening,
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我意思是說，我晚上會感到累
07:17
but I was 56 years old.
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但我已經五十歲了啊
07:19
I was slowly losing weight,
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我的體重慢慢下降
07:21
but for me, that was what the doctor told me to do.
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但是對我來說，是醫生叫我這樣做的
07:24
It was really something.
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這真是很酷
07:27
And this is the diagram of stage four kidney cancer
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這是腎臟癌第四期的圖表
07:30
from the drug I eventually got.
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最終我終於從我吃的藥得到
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
07:35
In the left femur, the left thigh bone, there's another one.
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在左邊的股骨，左邊的大腿骨，有另一個
07:38
I had one. My leg eventually snapped.
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我曾經有過一個，我的腿最後斷裂了
07:40
I fainted and landed on it, and it broke.
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我昏倒然後倒在腳上，然後就斷了
07:43
There's one in the skull,
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頭骨裡也有一個
07:45
and then just 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
07:47
including, by the time my treatment started,
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包括在內，就在我的治療開始時
07:49
one was growing out of my tongue.
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我的舌頭長出了一個
07:51
I had kidney cancer growing out of my tongue.
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我的舌頭長出了腎臟瘤
07:53
And what I read was that my median survival
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我讀到的剩下的日子
07:55
was 24 weeks.
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是24周
07:57
This was bad.
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這真糟
07:59
I was facing the grave.
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我快死了
08:02
I thought, "What's my mother's face going to look like
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我想，我媽到時候看起來會如何
08:04
on the day of my funeral?"
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在我的喪禮那天
08:06
I had to sit down with my daughter
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我必須和我女兒坐下來
08:08
and say, "Here's the situation."
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說「情況是這樣」
08:11
Her boyfriend was with her.
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她男友和她一起
08:13
I said, "I don't want you guys to get married prematurely
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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."
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只是希望你們能在爸爸還在時結婚
08:19
It's really serious.
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這真的很嚴肅
08:21
Because if you wonder why patients are motivated and want to help,
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因為如果你覺得奇怪為什麼病人會主動幫忙
08:24
think about this.
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這樣想吧
08:26
Well, my doctor prescribed a patient community,
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我的醫生開給我的處方是一個病人社群
08:28
Acor.org,
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Acor組織網站
08:30
a network of cancer patients, of all amazing things.
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一個有著各種好東西的癌症病人網站
08:33
Very quickly they told me,
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他們很快地告訴我
08:35
"Kidney cancer is an uncommon disease.
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腎臟癌是一個罕見的疾病
08:37
Get yourself to a specialist center.
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趕快去找一個專家中心
08:39
There is no cure, but there's something that sometimes works --
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雖然沒有治癒方法，但是有時候還是有些有用的東西--
08:42
it usually doesn't --
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通常是沒用的--
08:44
called high-dosage interleukin.
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叫做高劑量白細胞介素
08:46
Most hospitals don't offer it,
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大部分醫院沒有提供
08:48
so they won't even tell you it exists.
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所以他們甚至不會告訴你有這種東西
08:50
And don't let them give you anything else first.
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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
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順道一提，有四個醫生
08:54
in your part of the United States who offer it and their phone numbers."
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在你住的美國區域裡，他們提供這種藥還有他們的電話
08:57
How amazing is that?
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是不是很棒?
08:59
(Applause)
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(鼓掌)
09:02
Here's the thing.
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問題是
09:04
Here we are, four years later:
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四年後的現在
09:06
you can't find a website that gives patients that information.
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你找不到提供病人這個訊息的網站
09:09
Government-approved, American Cancer Society,
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政府核准的，美國癌症社群
09:12
but patients know what patients want to know.
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但是病人知道病人想知道的
09:15
It's the power of patient networks.
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這是病人網絡的力量
09:18
This amazing substance --
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這個驚人實體
09:20
again I mentioned, where does my body end?
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再提到我之前說過的，我的身體的極限在哪裡?
09:23
My oncologist and I talk a lot these days
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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.
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因為我試著讓我的演講技術上是正確的
09:27
And he said, "You know, the immune system
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他說，你知道吧，免疫系統
09:29
is good at detecting invaders --
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很擅長偵測入侵者
09:32
bacteria coming from outside --
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細菌是從外面來的
09:35
but when it's your own tissue that you've grown,
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但如果長得是自己的身體組織
09:37
it's a whole different thing."
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那就完全是另一回事了
09:39
And I went through a mental exercise actually,
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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
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因為我自己開了一個病人支持社群
09:45
on a website,
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在一個網站上
09:47
and one of my friends, one of my relatives actually,
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然後我一個朋友，事實上是我一個親戚
09:49
said, "Look, Dave, who grew this thing?
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說，戴維，是誰長了這些東西?
09:53
Are you going to set yourself up
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你要設陷阱給自己嗎?
09:55
as mentally attacking yourself?"
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用心理戰打自己
09:57
So we went into it.
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所以我們開始討論它
09:59
And the story of how all that happens is in this book.
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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.
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總之，這些數字呈現出來的就是這樣
10:04
Me being me, I put the numbers from my hospital's website
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為了做自己，我把我的醫院網站上的數字
10:07
from my tumor sizes into a spreadsheet.
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我的腫瘤大小數字做成一個電子表格
10:09
Don't worry about the numbers.
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別管那些數字
10:11
You see, that's the immune system.
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你看，那是免疫系統
10:13
Amazing thing, those two yellow lines
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驚人的是，那兩條黃色線
10:15
are where I got the two doses of interleukin
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是我注射了兩劑量的白細胞介素
10:17
two months apart.
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兩個月後
10:19
And look at how the tumor sizes plummeted in between.
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你看腫瘤的大小在期間急速縮小了
10:22
Just incredible.
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真是令人難以置信
10:24
Who knows what we'll be able to do when we learn to make more use of it.
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誰知道如果我們學會多利用它會讓我們能夠做到什麼
10:27
The punch line is that a year and a half later,
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關鍵句就是一年半後
10:30
I was there when this magnificent young woman, my daughter,
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我當時在場，當我的女兒，這個年輕優秀的女人
10:33
got married.
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結婚時
10:35
And when she came down those steps,
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當她走下那些台階時
10:38
and it was just her and me for that moment,
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當時只有她和我
10:40
I was so glad that she didn't have to say to her mother,
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我好欣慰她不必和她母親說
10:43
"I wish Dad could have been here."
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我好希望父親能在這裡
10:45
And this is what we're doing
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這就是我們在做的
10:47
when we make health care better.
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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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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.
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他們盡所能再改進健康關懷
10:55
This is Regina Holliday,
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這位是Regina Holliday
10:57
a painter in Washington D.C.,
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住在華盛頓的病人
10:59
whose husband died of kidney cancer a year after my disease.
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在我疾病發生後一年死於腎臟癌
11:02
She's painting here a mural
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她在這裡畫了一個壁畫
11:04
of his horrible final weeks in the hospital.
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有關她先生在醫院的最後幾個禮拜
11:07
One of the things that she discovered
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她發現其中一件事
11:09
was that her husband's medical record
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就是她的先生的醫療紀錄
11:11
in this paper folder
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在這個文件資料夾裡
11:13
was just disorganized.
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雜亂無章
11:15
And she thought, "You know, if I have a nutrition facts label
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然後她這樣想，如果我有一個營養標籤
11:18
on the side of a cereal box,
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在麥片盒側邊
11:20
why can't there be something that simple
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那為什麼不能有某個簡單的東西
11:22
telling every new nurse who comes on duty,
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可以告訴每個值勤的新護士
11:24
every new doctor,
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每個新醫生
11:26
the basics about my husband's condition?"
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有關我先生狀況的基本資料呢?
11:28
So she painted this medical facts mural
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所以她畫了這個醫學事實壁畫
11:30
with a nutrition label,
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用一個營養標籤
11:32
something like that,
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某個像這樣的東西
11:34
in a diagram of him.
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圖解她先生的狀況
11:36
She then, last year, painted this diagram.
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去年，她畫了這個圖表
11:39
She studied health care like me.
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她也和我一樣研究健康關懷
11:41
She came to realize that there were a lot of people
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她慢慢知道有很多人
11:43
who'd written patient advocate books
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在寫擁護病人的書
11:45
that you just don't hear about at medical conferences.
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在醫學會議裡是不會聽到的
11:48
Patients are such an underutilized resource.
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病人是多麼不被充分利用的資源啊
11:52
Well as it says in my introduction,
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就像我在介紹裡說的
11:54
I've gotten somewhat known for saying that patients should have access to their data.
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我有資格說病人們應該有拿到他們資料的管道
11:57
And I actually said at one conference a couple of years ago,
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實際上，幾年前我已經在一個會議裡說過了
12:00
"Give me my damn data,
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把我的資料數據給我
12:02
because you people can't be trusted to keep it clean."
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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 --
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聽到她有我們該死的資料數據
12:07
it's a pun --
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這是雙關語
12:09
which is starting to break out, starting to break through --
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開始'要崩潰，衝破
12:11
the water symbolizes our data.
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水象徵我們的數據資料
12:14
And in fact, I want to do a little something improvisational for you here.
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事實上，我想為你們做一些即興的事
12:17
There's a guy on Twitter that I know,
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我認識一個在推特上的男孩
12:19
a health IT guy outside Boston,
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一個住在波士頓外的健康工程師
12:21
and he wrote the e-Patient rap.
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他寫了一個e-病人饒舌歌
12:24
And it goes like this.
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是這樣唱的
12:32
♫ Gimme my damn data ♫
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給我我該死的資料
12:34
♫ I want to be an e-Patient just like Dave ♫
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我想和戴福一樣做一個網路病人
12:36
♫ Gimme my damn data, cuz it's my life to save ♫
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給我該死的資料，因為要救就是我的生命
12:39
Now I'm not going to go any further.
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好了，我不唱下去了
12:41
(Applause)
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(鼓掌)
12:55
Well thank you. That shot the timing.
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謝謝，時間剛剛好
12:58
(Laughter)
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(掌聲)
13:00
Think about the possibility,
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想想這個可能性
13:02
why is it that iPhones and iPads
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為什麼蘋果手機和電子書
13:04
advance far faster
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先進的快多了
13:06
than the health tools that are available to you
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比起那些可以讓你使用的健康工具
13:08
to help take care of your family?
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來幫助關懷家人
13:10
Here's a website, VisibleBody.com,
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這裡有個網站，可透視身體網站
13:12
that I stumbled across.
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我不小心看到
13:14
And I thought, "You know, I wonder what my soleus muscle is?"
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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.
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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 soleus muscle."
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然後我看到了，喔!那就是腎臟和比目魚肌。
13:22
And I was rotating it in 3D
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然後我把它用3D旋轉
13:24
and saying, "I understand now."
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然後說，我了解了。
13:26
And then I realized it reminded me of Google Earth,
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然後我領悟到它讓我想到Google地球
13:29
where you can fly to any address.
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你可以像飛的一樣到任何地址
13:32
And I thought, "Why not take this
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然後我想，為什麼不利用這個
13:34
and connect it to my digital scan data
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然後連結到我的數位掃描資料
13:37
and have Google Earth for my body?"
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然後創造出我身體的Google地球?
13:40
What did Google come out with this year?
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今年Google發佈了什麼?
13:42
Now there's Google Body browser.
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現在有Google身體瀏覽器
13:45
But you see, it's still generic.
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不過他還是通用性的
13:47
It's not my data.
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不是我的數據資料
13:49
But if we can get that data out from behind the dam
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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,
337
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所以軟體研發者可以抓住這個機會
13:55
the way software innovators like to do,
338
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就像它們喜歡做的事一樣
13:57
who knows what we'll be able to come up with.
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誰知道我們能做出什麼來
13:59
One final story: this is Kelly Young,
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最後一個故事，這位是Kelly Young
14:01
a rheumatoid arthritis patient
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一個類風濕關節炎的病人
14:03
from Florida.
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來自佛羅里達
14:05
This is a live story
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這是一個真實故事
14:07
unfolding just in the last few weeks.
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在前幾個禮拜前才被發現
14:09
RA patients, as they call themselves --
345
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RA病人，他們這樣稱呼自己--
14:12
her blog is RA Warrior --
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她的部落格是RA戰士--
14:14
have a big problem
347
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有一個大麻煩
14:16
because 40 percent of them have no visible symptoms.
348
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因為他門之中有百分之40沒有明顯症狀
14:19
And that makes it just really hard to tell how the disease is going.
349
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這讓人們很難能去判斷這個疾病的狀況
14:22
And some doctors think, "Yeah right, you're really in pain."
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有些醫生認為，嗯，對!你真的很痛苦
14:25
Well she found, through her online research,
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從她的網路上搜尋中，她發現
14:28
a nuclear bone scan
352
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一個核子骨頭掃描
14:30
that's usually used for cancer,
353
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通常是用於癌症
14:32
but it can also reveal inflammation.
354
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但也用來發現炎症
14:34
And she saw
355
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然後她了解
14:36
that if there is no inflammation
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如果沒有發炎
14:38
then the scan is a uniform gray.
357
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那掃描結果會是整個灰色
14:41
So she took it.
358
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所以她做了掃描
14:43
And the radiologist report said, "No cancer found."
359
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3000
放射科醫生報告說，沒有發現癌症
14:46
Well that's not what he was supposed to do with it.
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但那不是他應該做的
14:48
So she had it read again, she wanted to have it read again,
361
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所以她又再次讓掃描結果被解讀一次，她想這麼做。
14:51
and her doctor fired her.
362
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於是她的醫生開除了她
14:53
She pulled up the CD.
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她把光碟拉出來
14:55
He said, "If you don't want to follow my instructions,
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他說，如果你不遵照我的指示
14:57
go away."
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就走開
14:59
So she pulled up the CD of the scan images,
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所以她拉出掃描'影像的CD
15:02
and look at all those hot spots.
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看著那些熱點
15:04
And she's now actively engaged on her blog
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現在她很積極地在寫部落格
15:07
in looking for assistance in getting better care.
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想尋找更好的護理協助
15:10
See, that is an empowered patient -- no medical training.
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看吧，那是一個有力量的病人，沒有受過醫學訓練
15:13
We are, you are,
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我們，你們都是
15:15
the most underused resource in health care.
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在健康護理裡最不被充分利用的資源
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
15:22
How big a deal was this?
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這是多麼大的一件事啊?
15:24
Well at TED2009,
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在TED2009年
15:26
Tim Berners-Lee himself, inventor of the Web, gave a talk
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網路發明人Tim Berners-Lee他自己演講到
15:29
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 go out
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不是去瀏覽網站
15:34
and find other people's articles about the data,
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去發現他人有關數據資料的文章
15:36
but the raw data.
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而是有關原始資料
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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
15:40
"Raw data now.
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現在就要原始資料
15:42
Raw data now."
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現在就要原始資料
15:44
And I ask you,
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我需要你這麼做
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
15:59
(Applause)
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(鼓掌)
16:15
For all the patients around the world
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給所有全世界的病人
16:18
watching this on the webcast,
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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。
16:22
Host: And bless yourself. Thank you very much.
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主持人: 願上帝也保佑你。非常謝謝你們。
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