It's an amazing thing that we're here to talk about the year of patients rising. You heard stories earlier today about patients who are taking control of their cases, patients who are saying, "You know what, I know what the odds are, but I'm going to look for more information. I'm going to define what the terms of my success are." I'm going to be sharing with you how, four years ago, I almost died -- found out I was, in fact, already almost dead -- and what I then found out about what's called the e-Patient movement. I'll explain what that term means. I had been blogging under the name "Patient Dave," and when I discovered this, I just renamed myself e-Patient Dave.
太神奇了,我們能在這裡談談 病人崛起年。 稍早你們已經聽過 有些病人現在能掌控住自己的病情 有些病人說:你知道嗎,我知道我有多小的機會, 但我要去找尋更多資訊 我將要闡述 我自己的成功 我即將和你們分享 我如何在四年前幾乎要死掉時 發現我其實 已經幾乎死了 在那時我也發現所謂的e-病人運動-- 我等會解釋我所謂的成功是什麼 我一直以病人戴維的稱號寫部落格 當我發現這樣的事情之後 (e-病人) 我就改名為e-病人戴維
Regarding the word "patient": When I first started a few years ago getting involved in health care and attending meetings as just a casual observer, I noticed that people would talk about patients as if it was somebody who's not in the room here -- somebody out there. Some of our talks today, we still act like that. But I'm here to tell you: "patient" is not a third-person word. All right? You yourself will find yourself in a hospital bed -- or your mother, your child -- there are heads nodding, people who say, "Yes, I know exactly what you mean."
關於「病人」這個字, 當我幾年前一開始 參與健康關懷 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 好像這個人不在現場似的 是某個事不關己的人 今天某些演講還是用這種態度 但我要告訴你們 病人並不是一個第三者 你自己 有天也會躺在醫院裡 或者你的母親和小孩 有些人在點頭說「沒錯,我感同身受。」 所以當你聽到我今天要談論的
So when you hear what I'm going to talk about here today, first of all, I want to say that I am here on behalf of all the patients that I have ever met, all the ones I haven't met. This is about letting patients play a more active role in helping health care, in fixing health care. One of the senior doctors at my hospital, Charlie Safran, and his colleague, Warner Slack, have been saying for decades that the most underutilized resource in all of health care is the patient. They have been saying that since the 1970s.
首先,我想要說 我僅代表 所有我遇過的 以及我未曾遇過的病人 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 在我醫院裡的一個前輩醫生 Charlie Safran以及他的同事Warner Slack 數十年來一直宣導的 在所有健康關懷的資源裡最沒有被充分利用的 就是病人 他們從1970年代就一直再宣導這個
Now, I'm going to step back in history. This is from July, 1969. I was a freshman in college, and this was when we first landed on the Moon. And it was the first time we had ever seen from another surface -- that's the place where you and I are right now, where we live. The world was changing. It was about to change in ways that nobody could foresee. A few weeks later, Woodstock happened. Three days of fun and music. Here, just for historical authenticity, is a picture of me in that year.
現在我要重回歷史 在1969年的7月 我那時是大學新鮮人 那時也是人類第一次登陸地球 那是第一次 我們得以從另一個地表看地球 就是你和我現在的所在 我們住的地方 當時那個世界正在改變 它即將以無人能預知的方式改變 幾個星期後 伍德斯托克音樂節發生了 整整三天的音樂和樂趣 為了考據這歷史的真實性 這有一張我當年的照片
(Laughter)
(笑聲)
Yeah, the wavy hair, the blue eyes -- it was really something.
對,波浪捲和藍眼睛 蠻酷的
That fall of 1969, the Whole Earth Catalog came out. It was a hippie journal of self-sufficiency. We think of hippies of being just hedonists, but there's a very strong component -- I was in that movement -- a very strong component of being responsible for yourself. This book's title's subtitle is "Access to Tools." It talked about how to build your own house, how to grow your own food, all kinds of things. In the 1980s, this young doctor, Tom Ferguson, was the medical editor of the Whole Earth Catalog. He saw that the great majority of what we do in medicine and health care is taking care of ourselves. In fact, he said it was 70 to 80 percent of how we actually take care of our bodies. Well, he also saw that when health care turns to medical care because of a more serious disease, the key thing that holds us back is access to information. And when the Web came along, that changed everything, because not only could we find information, we could find other people like ourselves who could gather, who could bring us information. And he coined this term "e-Patients" -- equipped, engaged, empowered, enabled. Obviously, at this stage of life he was in a somewhat more dignified form than he was back then.
1969年的秋天 美國次文化期刊發行了 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 但其中有一個很重要的元素,我自己參與過那一場運動 一個很重要的元素 就是對自己負責 這本書標題中的副標題 是接近工具 它談論到如何建造自己的房子 如何栽種自己的食物和所有其他東西 在1980年代 醫生Tom Ferguson 是美國次文化期刊的醫療編輯 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 事實上,他說是有百分之七十至八十 我們真正照顧自己的身體 而且他也看到 當健康關懷轉到醫療關懷時 因為一個更嚴重的疾病 主要阻止我們的是資料的取得性 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 我們也能找到有相同狀況的病人 可以聚在一起,互相提供資訊 他可以加入e-病人的行列 有裝備,能專心一致,賦予力量,有能力了 明顯地,在此人生階段 他比之前更有尊嚴
Now, I was an engaged patient long before I ever heard of the term. In 2006, I went to my doctor for a regular physical, and I had said, "I have a sore shoulder." Well, I got an X-ray, and the next morning -- you may have noticed, those of you who have been through a medical crisis will understand this. This morning, some of the speakers named the date when they found out about their condition. For me, it was 9am on January 3, 2007. I was at the office; my desk was clean. I had the blue partition carpet on the walls. The phone rang and it was my doctor. He said, "Dave, I pulled up the X-ray image on the screen on the computer at home." He said, "Your shoulder is going to be fine, but Dave, there's something in your lung." And if you look in that red oval, that shadow was not supposed to be there. To make a long story short, I said, "So you need me to get back in there?" He said, "Yeah, we're going to need to do a CT scan of your chest." In parting, I said, "Is there anything I should do?" He said -- think about this one, this is the advice your doctor gives you: "Just go home and have a glass of wine with your wife."
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 2006年時,我為了一個例行檢查去看醫生 我說我肩膀痠痛 然後就照了X光 隔天早上 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 這個早晨,有些講者 把發現病情狀況的日期時間表明出來 我的是早上9點 2007年,1月3日 我在辦公室裡,桌上很乾淨 牆上有藍色的隔間毯 電話響了,是我的醫生打的 他說,戴維,我把X光片拉開 放在家裡的電腦螢幕上 他說,你的肩膀沒事 但是戴維你的肺裡有東西 如果你看一下那個紅色橢圓物 那邊不應該有那種陰影物 長話短說 所以我得回去醫院嗎? 他說,是,我們需要幫你的胸部做個電腦斷層掃描 而且告別前我說"我應該做什麼嗎?" 他說,考慮一下這個 這是你的醫生的良心建議 回家和你老婆喝杯酒吧
I went in for the CAT scan. It turns out there were five of these things in both my lungs. So at that point we knew that it was cancer. We knew it wasn't lung cancer. That meant it was metastasized from somewhere. The question was, where from? So I went in for an ultrasound. I got to do what many women have -- the jelly on the belly and the, "Bzzzz!" My wife came with me. She's a veterinarian, so she's seen lots of ultrasounds. I mean, she knows I'm not a dog.
我進去做電腦斷層掃描 結果我兩邊的肺部總共有五個這些東西 所以那時我們就知道那是癌症 我們知道那不是肺癌 它是從別處轉移過來的 問題是從哪裡來? 所以我去照了超音波 我必須做很多女人做的一樣 在腹部上塗上膠凍然後滋滋... 我老婆和我一起去的 他是一個獸醫 所以她看了很多超音波 我的意思是他知道我不是隻狗
(Laughter)
但是我們看到的,這是個核磁共振攝影
This is an MRI image. This is much sharper than an ultrasound would be. What we saw in that kidney was that big blob there. There were actually two of these: one was growing out the front and had already erupted and latched onto the bowel. One was growing out the back and it attached to the psoas muscle, which is a big muscle in the back that I'd never heard of, but all of a sudden I cared about it.
這筆超音波清楚多了 我們在腎臟裡看到的 是那邊的球狀物 而且實際上還有兩個 一個長在前面,而且已經爆發 深藏在腸子裡 一個長在背面,黏在比目魚肌上 這是一個我未曾聽聞的背部大肌肉 但是突然間我在意起它來
(Laughter)
我回家
I went home.
我一直在網路上搜詢資料,自從1989年起我就透過Compuserve上網
Now, I've been Googling -- I've been online since 1989, on CompuServe. I went home, and I know you can't read the details here; that's not important. My point is, I went to a respected medical website, WebMD, because I know how to filter out junk. I also found my wife online. Before I met her, I went through some suboptimal search results.
我回家去,我知道不能在這裡讀到詳細資訊 那不重要 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 我也在網路上找到老婆 遇到她之前 我瀏覽了一些未達理想的搜尋結果
(Laughter)
(笑聲)
So I looked for quality information. There's so much about trust -- what sources of information can we trust? Where does my body end and an invader start? A cancer, a tumor, is something you grow out of your own tissue. How does that happen? Where does medical ability end and start? Well, so what I read on WebMD: "The prognosis is poor for progressing renal cell cancer. Almost all patients are incurable." I've been online long enough to know if I don't like the first results I get, I go look for more. And what I found on other websites was, even by the third page of Google results: "Outlook is bleak." "Prognosis is grim." And I'm thinking, "What the heck?" I didn't feel sick at all. I mean, I'd been getting tired in the evening, but I was 56 years old, you know? I was slowly losing weight, but for me, that was what the doctor told me to do. It was really something.
所以我尋找有品質的資訊 這跟信任有很大的關係 我們能信任什麼樣的來源的資訊呢 我的身體極限在哪裡 侵略者從何開始 癌症和腫瘤是從你自己的組織長出來的 那是如何發生的? 醫療的能耐從哪裡 結束和開始? 所以我從WebMD讀到 病情結果預測不好 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 我的網路經驗多到知道 如果我不喜歡第一個搜尋結果 我就繼續找更多 而我找到的是在另一個網站 還是在Google搜尋的第三頁裡 前景堪慮 病情預測嚴酷 但我卻在想著,搞什麼鬼 我一點也不覺得病了 我意思是說,我晚上會感到累 但我已經五十歲了啊 我的體重慢慢下降 但是對我來說,是醫生叫我這樣做的 這真是很酷
And this is the diagram of stage 4 kidney cancer from the drug I eventually got. Totally by coincidence, there's that thing in my lung. In the left femur, the left thigh bone, there's another one. I had one. My leg eventually snapped. I fainted and landed on it, and it broke. There's one in the skull, and then for good measure, I had these other tumors, including, by the time my treatment started, one was growing out of my tongue. I had kidney cancer growing out of my tongue. And what I read was that my median survival was 24 weeks. This was bad. I was facing the grave. I thought, "What's my mother's face going to look like on the day of my funeral?" I had to sit down with my daughter and say, "Here's the situation." Her boyfriend was with her. I said, "I don't want you guys to get married prematurely, just so you can do it while Dad's still alive." It's really serious. If you wonder why patients are motivated and want to help, think about this.
這是腎臟癌第四期的圖表 最終我終於從我吃的藥得到 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 我曾經有過一個,我的腿最後斷裂了 我昏倒然後倒在腳上,然後就斷了 頭骨裡也有一個 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 我的舌頭長出了一個 我的舌頭長出了腎臟瘤 我讀到的剩下的日子 是24周 這真糟 我快死了 我想,我媽到時候看起來會如何 在我的喪禮那天 我必須和我女兒坐下來 說「情況是這樣」 她男友和她一起 我說我不希望你們太早結婚 只是希望你們能在爸爸還在時結婚 這真的很嚴肅 因為如果你覺得奇怪為什麼病人會主動幫忙 這樣想吧
Well, my doctor prescribed a patient community, ACOR.org, a network of cancer patients, of all amazing things. Very quickly they told me, "Kidney cancer is an uncommon disease. Get yourself to a specialist center. There is no cure, but there's something that sometimes works -- it usually doesn't -- called high-dosage interleukin. Most hospitals don't offer it, so they won't even tell you it exists. Don't let them give you anything else first. And by the way, here are four doctors in your part of the United States who offer it, and their phone numbers." How amazing is that?
我的醫生開給我的處方是一個病人社群 Acor組織網站 一個有著各種好東西的癌症病人網站 他們很快地告訴我 腎臟癌是一個罕見的疾病 趕快去找一個專家中心 雖然沒有治癒方法,但是有時候還是有些有用的東西-- 通常是沒用的-- 叫做高劑量白細胞介素 大部分醫院沒有提供 所以他們甚至不會告訴你有這種東西 而且不要讓他們先給你任何其他東西 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 是不是很棒?
(Applause)
(鼓掌)
Here's the thing: Here we are, four years later -- you can't find a website that gives patients that information. Government-approved, American Cancer Society, but patients know what patients want to know. It's the power of patient networks. This amazing substance -- again, I mentioned: Where does my body end? My oncologist and I talk a lot these days because I try to keep my talks technically accurate. And he said, "You know, the immune system is good at detecting invaders, bacteria coming from outside, but when it's your own tissue that you've grown, it's a whole different thing." And I went through a mental exercise, actually, because I started a patient support community of my own on a website, and one of my friends -- one of my relatives, actually -- said, "Look, Dave, who grew this thing? Are you going to set yourself up as mentally attacking yourself?" So we went into it. The story of how all that happened is in the book.
問題是 四年後的現在 你找不到提供病人這個訊息的網站 政府核准的,美國癌症社群 但是病人知道病人想知道的 這是病人網絡的力量 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? 這些日子以來,我的腫瘤學家和我談了很多。 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 很擅長偵測入侵者 細菌是從外面來的 但如果長得是自己的身體組織 那就完全是另一回事了 實際上我經歷了一場心理運動 因為我自己開了一個病人支持社群 在一個網站上 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? 你要設陷阱給自己嗎? 用心理戰打自己 所以我們開始討論它 這些如何發生的故事都在這本書裡
Anyway, this is the way the numbers unfolded. Me being me, I put the numbers from my hospital's website, for my tumor sizes, into a spreadsheet. Don't worry about the numbers. You see, that's the immune system. Amazing thing, those two yellow lines are where I got the two doses of interleukin two months apart. And look at how the tumor sizes plummeted in between. Just incredible. Who knows what we'll be able to do when we learn to make more use of it?
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 我的腫瘤大小數字做成一個電子表格 別管那些數字 你看,那是免疫系統 驚人的是,那兩條黃色線 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 真是令人難以置信 誰知道如果我們學會多利用它會讓我們能夠做到什麼
The punch line is that a year and a half later, I was there when this magnificent young woman, my daughter, got married. And when she came down those steps, and it was just her and me for that moment, I was so glad that she didn't have to say to her mother, "I wish Dad could have been here." And this is what we're doing when we make health care better.
關鍵句就是一年半後 我當時在場,當我的女兒,這個年輕優秀的女人 結婚時 當她走下那些台階時 當時只有她和我 我好欣慰她不必和她母親說 我好希望父親能在這裡 這就是我們在做的 當我們使健康關懷更好時
Now, I want to talk briefly about a couple of other patients who are doing everything in their power to improve health care. This is Regina Holliday, a painter in Washington DC, whose husband died of kidney cancer a year after my disease. She's painting, here, a mural of his horrible final weeks in the hospital. One of the things that she discovered was that her husband's medical record in this paper folder was just disorganized. And she thought, "You know, if I have a nutrition facts label on the side of a cereal box, why can't there be something that simple telling every new nurse who comes on duty, every new doctor, the basics about my husband's condition?" So she painted this medical facts mural with a nutrition label, something like that, in a diagram of him. She then, last year, painted this diagram.
現在我要簡單談一下幾個其他病人 他們盡所能再改進健康關懷 這位是Regina Holliday 住在華盛頓的病人 在我疾病發生後一年死於腎臟癌 她在這裡畫了一個壁畫 有關她先生在醫院的最後幾個禮拜 她發現其中一件事 就是她的先生的醫療紀錄 在這個文件資料夾裡 雜亂無章 然後她這樣想,如果我有一個營養標籤 在麥片盒側邊 那為什麼不能有某個簡單的東西 可以告訴每個值勤的新護士 每個新醫生 有關我先生狀況的基本資料呢? 所以她畫了這個醫學事實壁畫 用一個營養標籤 某個像這樣的東西 圖解她先生的狀況 去年,她畫了這個圖表 她也和我一樣研究健康關懷
She studied health care like me. She came to realize there were a lot of people who'd written patient-advocate books that you just don't hear about at medical conferences. Patients are such an underutilized resource. Well, as it said in my introduction, I've gotten somewhat known for saying that patients should have access to their data. I actually said at one conference a couple of years ago, "Give me my damn data, because you people can't be trusted to keep it clean." And here, she has our "damned" data -- it's a pun -- which is starting to break out, starting to break through -- the water symbolizes our data.
她慢慢知道有很多人 在寫擁護病人的書 在醫學會議裡是不會聽到的 病人是多麼不被充分利用的資源啊 就像我在介紹裡說的 我有資格說病人們應該有拿到他們資料的管道 實際上,幾年前我已經在一個會議裡說過了 把我的資料數據給我 因為你們沒辦法被信任能夠保持它的完整性 聽到她有我們該死的資料數據 這是雙關語 開始'要崩潰,衝破 水象徵我們的數據資料
And in fact, I want to do a little something improvisational for you. There's a guy on Twitter that I know, a health IT guy outside Boston, and he wrote the e-Patient rap. And it goes like this.
事實上,我想為你們做一些即興的事 我認識一個在推特上的男孩 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 是這樣唱的
(Laughter)
(Beatboxing)
(Rapping) Gimme my damn data I wanna be an e-Patient just like Dave Gimme my damn data, 'cause it's my life to save (Normal voice) Now, I'm not going to go any further --
給我我該死的資料 我想和戴福一樣做一個網路病人 給我該死的資料,因為要救就是我的生命 好了,我不唱下去了
(Applause) (Cheering)
(鼓掌)
Well, thank you. That shot the timing.
謝謝,時間剛剛好
(Laughter)
(掌聲)
Think about the possibility. Why is it that iPhones and iPads advance far faster than the health tools that are available to you to help take care of your family? Here's a website, VisibleBody.com, that I stumbled across. And I thought, "You know, I wonder what my psoas muscle is?" So you can click on things and remove it. And I saw, "Aha! That's the kidney and the psoas muscle." I was rotating it in 3D and saying, "I understand now." And then I realized it reminded me of Google Earth, where you can fly to any address. And I thought, "Why not take this and connect it to my digital scan data and have Google Earth for my body?" What did Google come out with this year? Now there's Google Body browser. But you see, it's still generic. It's not my data. But if we can get that data out from behind the dam so software innovators can pounce on it the way software innovators like to do, who knows what we'll be able to come up with.
想想這個可能性 為什麼蘋果手機和電子書 先進的快多了 比起那些可以讓你使用的健康工具 來幫助關懷家人 這裡有個網站,可透視身體網站 我不小心看到 我想,你知道嗎?我在想我的比目魚肌長怎樣? 所以你可以點點看那個東西也可以移動它 然後我看到了,喔!那就是腎臟和比目魚肌。 然後我把它用3D旋轉 然後說,我了解了。 然後我領悟到它讓我想到Google地球 你可以像飛的一樣到任何地址 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 然後創造出我身體的Google地球? 今年Google發佈了什麼? 現在有Google身體瀏覽器 不過他還是通用性的 不是我的數據資料 但是如果我們可以從水壩後得到數據 所以軟體研發者可以抓住這個機會 就像它們喜歡做的事一樣 誰知道我們能做出什麼來
One final story. This is Kelly Young, a rheumatoid arthritis patient from Florida. This is a live story, unfolding just in the last few weeks. RA patients, as they call themselves -- her blog is "RA Warrior" -- have a big problem, because 40 percent of them have no visible symptoms. And that makes it really hard to tell how the disease is going, and some doctors think, "Yeah right, you're really in pain." Well, she found, through her online research, a nuclear bone scan that's usually used for cancer, but it can also reveal inflammation. And she saw that if there is no inflammation, then the scan is a uniform gray. So she took it. And the radiologist's report said, "No cancer found." Well, that's not what he was supposed to do with it. So she wanted to have it read again, and her doctor fired her. She pulled up the CD. He said, "If you don't want to follow my instructions, go away." So she pulled up the CD of the scan images, and look at all those hot spots. And she's now actively engaged on her blog in looking for assistance in getting better care. See, that is an empowered patient -- no medical training.
最後一個故事,這位是Kelly Young 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 在前幾個禮拜前才被發現 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 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 有些醫生認為,嗯,對!你真的很痛苦 從她的網路上搜尋中,她發現 一個核子骨頭掃描 通常是用於癌症 但也用來發現炎症 然後她了解 如果沒有發炎 那掃描結果會是整個灰色 所以她做了掃描 放射科醫生報告說,沒有發現癌症 但那不是他應該做的 所以她又再次讓掃描結果被解讀一次,她想這麼做。 於是她的醫生開除了她 她把光碟拉出來 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 看著那些熱點 現在她很積極地在寫部落格 想尋找更好的護理協助 看吧,那是一個有力量的病人,沒有受過醫學訓練
We are, you are, the most underused resource in health care. What she was able to do was because she had access to the raw data. How big a deal was this? Well at TED2009, Tim Berners-Lee himself, inventor of the Web, gave a talk where he said the next big thing is not to have your browser find other people's articles about the data, but the raw data. And he got them chanting by the end of the talk, "Raw data now! Raw data now!" And I ask you, three words, please, to improve health care: Let patients help! Let patients help! Let patients help! Let patients help!
我們,你們都是 在健康護理裡最不被充分利用的資源 她之所以能做到這樣 是因為她能取得原始數據資料 這是多麼大的一件事啊? 在TED2009年 網路發明人Tim Berners-Lee他自己演講到 下一個大事件 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 然後他讓大家在演講後一起口誦 現在就要原始資料 現在就要原始資料 我需要你這麼做 請說三個字來改進健康醫護 讓病人幫助病人 讓病人幫助病人 讓病人幫助病人 讓病人幫助病人
Thank you.
謝謝
(Applause)
(鼓掌)
For all the patients around the world watching this on the Webcast, God bless you, everyone. Let patients help.
給所有全世界的病人 在網路上看著轉播的你們 願上帝保佑你,每一個人,讓病人幫助病人。
Host: And bless yourself. Thank you very much.
主持人: 願上帝也保佑你。非常謝謝你們。