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JamieHeywood_2009P-_我弟弟激发出的好点子_
When my brother called me in December of 1998 he said the news does not look good. 1998年12月,我弟弟打电话告诉我, 他的病情不太好了。
This is him on the screen. 屏幕上这个人就是他。
He'd just been diagnosed with ALS, which is a disease that the average lifespan is three years. 他那时刚刚被诊断为肌萎缩性侧索硬化症。 患上这个病后,平均寿命仅剩三年。
diagnosed:v.诊断(疾病);判断(问题的原因);(diagnose的过去分词和过去式) lifespan:n.寿命;预期生命期限;预期使用期限;
It paralyzes you. It starts by killing the motor neurons in your spinal cord . 它通过杀死脊髓中的运动神经元, 致使病人瘫痪。
paralyzes:vt.使麻痹;使瘫痪; spinal cord:n.脊髓;
And you go from being a healthy, robust 29 year old male, to someone that cannot breathe, cannot move, cannot speak. 它使你从一个健康的、 强壮的29岁男人, 变成一个无法呼吸, 无法移动,无法说话的人。
robust:adj.强健的;健康的;粗野的;粗鲁的;
This has actually been, to me, a gift, because we began a journey to learn a new way of thinking about life. 然而,这对于我来说,确是一个礼物, 因着它,我们开始了一段 重新认识生命的旅程。
journey:n.旅行;行程;vi.旅行;
And even though Steven passed away three years ago we had an amazing journey as a family. 尽管斯蒂夫三年前离开了, 我们还是作为一个家庭,共度了这个奇妙的旅程。
We did not even -- 我们甚至没有——
I think adversity is not even the right word. 我想,“不幸”甚至都不适于用来形容这段经历。
adversity:n.逆境;不幸;灾难;灾祸;
We looked at this and we said we're going to do something with this in an incredibly positive way. 我们审视着这个事实,而后决定, 我们要用一种惊人的积极来面对它。
incredibly:adv.难以置信地;非常地; positive:adj.积极的;[数]正的,[医][化学]阳性的;确定的;n.正数;[摄]正片;
And I want to talk today about one of the things that we decided to do, which was to think about a new way of approaching healthcare . 于是,我今天将要 说一说其中一件我们决定要做的事。 我们想探索一条医疗保健的新路。
approaching:v.靠近,接近;接洽;建议;要求;(approach的现在分词) healthcare:n.医疗保健;健康护理,健康服务;卫生保健;
Because, as we all know here today, it doesn't work very well. 因为,正如我们所知, 现今的医疗方法并不尽如人意。
I want to talk about it in the context of a story. 下面,我将结合一个故事,讲讲我们所做的这件事。
context:n.环境;上下文;来龙去脉;
This is the story of my brother. 这是关于我弟弟的故事。
But it's just a story. And I want to go beyond the story, and go to something more. 但,我希望跨出这件事的范围, 触及更深远的东西。
'"Given my status , what is the best outcome “鉴于我现在的状态,什么是我能期待达到的最好的结果,
status:n.地位;状态;情形;重要身份; outcome:n.结果,结局;成果;
I can hope to achieve, and how do I get there?" 我又如何去得到它？”
Is what we are here to do in medicine, is what everyone should do. 这句话是我们在这里针对医疗所做的探索,也是每个人应该做的思考。
And those questions all have variables to them. 每个人的问题和解答都不同
variables:n.[数]变量;
All of our statuses are different. 因为我们每个人的状况都不一样,
statuses:n.地位;状态;情形;重要身分;
All of our hopes and dreams, what we want to accomplish , is different, and our paths will be different, they are all stories. 我们的期望和梦想不一样, 我们接近梦想的道路也不一样, 这些都可以写成不同的故事。
accomplish:v.完成;实现;达到;
But it's a story until we convert it to data and so what we do, this concept we had, was to take Steven's status, "What is my status?" 是的,在我们把这转换为数据之前,这仅仅只是一个故事。 所以,我们提出的概念, 是列出斯蒂夫的状态——“我的状态是什么”,
convert:v.转换; n.改变宗教(或信仰、观点)的人;
and go from this concept of walking, breathing, and then his hands, speak, and ultimately happiness and function. 从走路,呼吸 到动手,说话 最后,是幸福感和功能性。
ultimately:adv.最终;最后;归根结底;终究;
So, the first set of pathologies , they end up in the stick man on his icon, 这第一系里的病理组成了这个条状的人 的标志。
pathologies:n.病理学(复数pathologies);
But the rest of them are really what's important here. 然而,在这里,其余的信息才是真正关键的东西。
Because Steven, despite the fact that he was paralyzed , as he was in that pool, he could not walk, he could not use his arms, that's why he had the little floaty things on them. 因为,尽管斯蒂夫已经瘫痪, 你可以看到他在那个游泳池里,无法走动, 无法使用手臂,因此,你看到吗？
despite:prep.尽管,不管;n.轻视;憎恨;侮辱; paralyzed:adj.瘫痪的;麻痹的;v.使麻痹;使无力;使失去勇气(paralyze的过去分词); floaty:adj.吃水浅的;能浮起的;
Did you see those? 他身上戴着那些小的浮力块。
He was happy. We were at the beach. 但他很幸福。当时我们在一个沙滩上,
He was raising his son. And he was productive . 他正举着他的儿子。并且他还具有很好的创造力。
productive:adj.能生产的;生产的,生产性的;多产的;富有成效的;
And we took this, and we converted it into data. 于是我们提取这个信息,也将它转换成数据。
converted:adj.修改的;改变信仰的;v.转变;改变信仰(convert的过去式和过去分词形式);
But it's not a data point at that one moment in time. 但这并不是在一个时间点上的一个数据点。
It's a data point of Steven in a context. 只是一个代表了斯蒂夫在一定生活环境下的数据。
Here he is in the pool. But here he is healthy, as a builder , taller, stronger, got all the women, amazing guy. 这个点,表示他在游泳池里。而这个点,表示他还是一个健康的建筑工人, 高大、强壮, 赢得所有女人的青睐,非常迷人。
builder:n.建筑者;建立者;
Here he is walking down the isle , but he can barely walk now, so it's impaired . 这个点表示他从小岛上走下来, 但他已经基本无法走路,所以已经是受损的。
isle:n.岛;小岛; barely:adv.仅仅,勉强;几乎不;公开地;贫乏地; impaired:adj.受损的;v.损害(impair的过去式和过去分词);
And he could still hold his wife's hand, but he couldn't do buttons on his clothes, can't feed himself. 他仍然可以牵着太太的手,但他无法自己扣扣子, 无法自己吃饭。
And here he is, paralyzed completely, unable to breathe and move, over this time journey. 而到这里,他已经完全瘫痪, 在这段时间里,他已经无法呼吸和移动。
These stories of his life, converted to data. 这样,我们将他的生命旅程转换为这些数据。
He renovated my carriage house when he was completely paralyzed, and unable to speak, and unable to breathe, and he won an award for a historic restoration . 他曾翻修过我的马厩, 当他完全瘫痪,无法说话、 无法呼吸之后,他赢得了一个保护历史建筑的奖励。
renovated:v.修复;翻新;重新粉刷;(renovate的过去式和过去分词) carriage house:n.马厩改建的房屋; historic:adj.有历史意义的;历史上著名的; restoration:n.恢复;复位;王政复辟;归还;
So, here is Steven alone, sharing this story in the world. 到此为止,这是斯蒂夫一个人在与全世界分享他的故事。
And this is the insight , the thing that we are excited about. 而这正是这件事的内在意义, 是我们为之感到激动的原因。
insight:n.洞察力;洞悉;
Because we have gone away from the community that we are, the fact that we really do love each other and want to care for each other. 因为我们已经从我们所在的社区走出来, 因为我们彼此相爱、我们希望照顾对方的缘故,
community:n.社区;[生态]群落;共同体;团体;
We need to give to others to be successful. 我们应该使得对方成功。
So, Steven is sharing this story, 因此,斯蒂夫在分享他的故事,
But he is not alone. 但他并不是孤单的。
There are so many other people sharing their stories. 这里有许多其他的病人在分享他们的故事。
And not stories in words, but stories in data and words. 这些并不是仅仅用文字写成的故事,
And we convert that information into this structure , this understanding, this ability to convert those stories into something that is computable. 于是,我们将那些信息转换成这样的结构, 这样的理解方式,这样一种 能将那些故事转换成可计算形式的能力。
structure:n.结构;构造;建筑物;vt.组织;构成;建造;
to which we can begin to change the way medicine is done and delivered. 借由此,我们就能开始 改变实现医疗的方式。
We did this for ALS. We can do this for depression , 我们不仅针对肌萎缩性侧索硬化症,我们还可以将此推广到抑郁症、
depression:n.沮丧;洼地;不景气;忧愁;
Parkinson's disease, HIV . 帕金森病、艾滋病上。
HIV:n.艾滋病病毒;
These are not simple, they are not internet scalable , they require thought and processes to find the meaningful information about the disease. 这样的推广并不容易,不只是用户的增加 而需要更多的考量和处理, 来找到关于这个疾病真正有用的信息。
scalable:adj.可攀登的;可去鳞的;可称量的; processes:n.过程; v.处理(process的第三人称单数形式); meaningful:adj.严肃的;重要的;重大的;意味深长的;
So, this is what it looks like when you go to the website. 这个,就是你登陆这个网站将看到的。
And I'm going to show you what Patients Like Me, the company that myself, my youngest brother, and a good friend from MIT started. 现在我将展示由我和我最小的弟弟, 以及一个来自麻省理工的好朋友 共同创建的这个公司。
Patients:n.接受治疗者,病人;(patient的复数)
Here are the actual patients, there are 45,000 of them now, sharing their stories as data. 这些是真正的病人,现在总量达到了45,000人, 他们在这里用数据的形式分享他们的故事。
Here is an M.S. patient. 这是一位患有“多发性硬化症”的病人。
His name is Mike, and he is uniformly impaired on cognition , vision , walking, sensation . 他的名字叫迈克, 他的认知、视觉、行走以及感觉能力都受到了同等的损伤。
uniformly:adv.一致地; cognition:n.认识;知识;认识能力; vision:n.视力;美景;幻象;想象力;v.想象;显现;梦见; sensation:n.感觉;轰动;感动;
Those are things that are different for each M.S. patient. 不同的多发性硬化症病人,在这些方面的受损情况都不同,
Each of them can have a different characteristic . 他们每个人都具有不同的特质。
characteristic:n.特征;特点;品质;adj.典型的;独特的;特有的;
You can see fibromyalgia , HIV, ALS, depression. 你在这里可以看到纤维肌痛、艾滋病、肌萎缩性侧索硬化症以及抑郁症。
fibromyalgia:n.纤维肌痛;纤维组织肌痛;
Look at this HIV patient down here, Zinny. 让我们一起来看看这位艾滋病患者,他叫基尼。
It's two years of this disease. All of the symptoms are not there. 这是他患上艾滋病的第二年,还没有出现所有的症状,
symptoms:n.症状;征候;征兆;(symptom的复数)
But he is working to keep his CD4 count high and his viral level low so he can make his life better. 不过他在努力保持高水平的免疫细胞数量, 并降低病毒水平,获得较好的生活质量。
viral:adj.滤过性毒菌引起的;滤过性毒菌的;
But you can aggregate this and you can discover things about treatments . 另一方面,我们可以综合这些信息,来发明更好的治疗方法。
aggregate:vi.集合; vt.集合; n.合计; adj.聚合的; treatments:n.治疗;疗法;对待;处理;讨论;(treatment的复数)
Look at this, 2,000 people almost, on Copaxone. 从这里我们看到,有近2000个病人使用帕克松治疗多发性硬化症。
These are patients currently on drugs, sharing data. 这些是现在在用药的病人, 他们在分享有关的数据。
currently:adv.当前;一般地;
I love some of these, physical exercise, prayer. 我非常喜欢其中的一些内容,比如锻炼,比如祷告。
physical:adj.[物]物理的;身体的;物质的;符合自然法则的;n.体格检查;
Anyone want to run a comparative effectiveness study on prayer against something? Let's look at prayer. 有没有人想研究祷告的人和其他人相比,用药效果有什么区别？ 让我们一起来看看祷告的人。
comparative:adj.比较的;相当的;n.比较级;对手; effectiveness:n.效力;
What I love about this, just sort of interesting design problems. 我喜欢的是这其中有趣的设计思路。
These are why people pray. 这些是人们做祷告的原因,
Here is the schedule of how frequently they -- It's a dose . 这里是他们做祷告的频率和时间——也就是“剂量”。
schedule:工作计划,日程安排 frequently:adv.频繁地,经常地;时常,屡次; dose:n.剂量;一剂,一服;v.服药;给药;给…服药;
So, anyone want to see the 32 patients that pray for 60 minutes a day, and see if they're doing better, they probably are. 接下来,有人想知道这32位每天祷告60分钟的病人的病情是否比别人要好吗, 也许是的喔。
Here they are. Or, it's an open network. 这就是结果。另一方面,这是一个开放的关系网,
Everybody is sharing. We can see it all. 每个人都在分享自己的数据,大家都可以看得见。
Or, I want to look at anxiety , because people are praying for anxiety. 或者,如果我想关注焦虑的情况,因为很多人因为焦虑而祷告,
anxiety:n.焦虑;渴望;挂念;令人焦虑的事;
And here is data on 15,000 people's current anxiety, right now. 那么现在马上就可以看到15,000个病人现在的焦虑情况,
How they treat it, the drugs, the components of it, their side effects, all of it in a rich environment, and you can drill down and see the individuals . 以及他们是如何治疗焦虑的。 他们用的药,药的成分, 药的副作用,所有都可以显示在一个完整的环境下。 接下来,你可以继续追踪下去,去研究这些个体。
components:n.部件;组件;成份(component复数); individuals:n.[经]个人;[生物]个体(individual的复数);
This amazing data allows us to drill down and see what this drug is for. 这些惊人的数据使得我们可以不断挖掘, 发现这个药物有什么作用。
1,500 people on this drug it think. Yes. 有1,500个人在用这个药,是的,
I want to talk to the 58 patients down here who are taking four milligrams a day. 我希望与其中58位病人交谈, 他们每天摄入4毫克这个药物。
milligrams:[计量]毫克;
And I want to talk to the ones of those that have been doing it for more than two years. 我还希望了解其中那些 用药两年以上的病人。
So, you can see the duration . 因为在这里我们还可以看到持续服药的时间。
duration:n.持续时间;期间;
All open, all available. 这所有数据都是开放的,随时可以获取。
I'm going to log in. 我现在登陆我的帐号。
And this is my brother's profile . 这是我弟弟的资料。
profile:n.轮廓;简介;形象;外形;v.扼要介绍;概述;写简介;
And this is a new version of our platform we're launching right now. 这是我们刚刚为这个平台开发的新版本,
platform:n.平台; v.把…放在台上[放在高处; launching:n.发射;开办;起飞;v.开始从事,发起,发动;(launch的现在分词)
This is the second generation. It's going to be in Flash . 是第二代产品,加入了动画效果。
Flash:n.闪光; v.闪光; adj.庞大的;
And you can see here, as this animates over, 在动画结束之后,你可以看到,
animates:vt.使有生气;使活泼;鼓舞;推动;adj.有生命的;
Steven's actual data against the background of all other patients, against this information. 所有病人数据的背景之上, 是斯蒂夫的数据。
The blue band is the 50th percentile . Steven is the 75th percentile, that he has non-genetic ALS. 这条蓝色带是50个百分点,而斯蒂夫是75个百分点, 并且他换的是非遗传性的肌萎缩性侧索硬化症。
band:n.带;波段;频带;箍;v.加彩条(或嵌条等);(将价格、收入等)划分档次; percentile:adj.百分率的;按百等分排列的;n.百分位; non-genetic:非遗传;
You scroll down in this profile and you can see all of his prescription drugs, but more than that, in the new version, I can look at this interactively . 向下继续滚动,你可以在这个资料中看到 他的所有处方药记录。 不仅如此,在这个新的版本中,我还可以看到更互动的形式。
scroll:n.纸卷;卷轴;涡卷形装饰;v.滚屏;滚动; prescription:n.处方;药方;医生开的药;开处方; interactively:adv.交互式地;互勤地;
Wait, poor spinal capacity . 重量,受损的脊髓能力。
capacity:n.能力;容量;资格,地位;生产力;
Doesn't this remind you of a great stock program? 这有没有让你想起那些好用的股票软件？
remind:v.提醒;使想起; stock:n.股票; v.库存; adj.老一套的;
Wouldn't it be great if the technology we used to take care of ourselves was as good as the technology we use to make money? 如果我们用来关注健康的技术, 能和我们用来挣钱的技术一样好用,岂不是非常美妙？
technology:n.技术;工艺;术语;
Detrol. In the side effects for his drug, integrated into that, the stem cell transplant that he had, the first in the world, shared openly for anyone who wants to see it. 我们可以看到,托特罗定的副作用 结合他做过的干细胞移植, 这些信息首次向全世界想要了解它的人公开。
integrated:adj.综合的; v.整合; (integrate的过去式和过去分词) stem cell:干细胞; transplant:v.移植;迁移;使移居;n.移植;移居者;
I love here, the cyberkinetics implant , which was, again, the only patients data that was online and available. 我还很喜欢这个,植入性人体应用前景, 这又是唯一一个在线、可用的病人数据。
implant:vt.种植;灌输;嵌入;n.[医]植入物;植入管;vi.被移植;
You can adjust the time scale . You can adjust the symptoms. 你可以调整显示的时间范围,可以调整显示的症状。
adjust:v.调整;调节;适应;习惯; scale:n.规模;比例;鳞;刻度;天平;数值范围;v.衡量;攀登;剥落;生水垢;
You can look at the interaction between how I treat my ALS. 你还可以看到我治疗肌萎缩性侧索硬化症的各种手段的相互作用:
interaction:n.[计]交互,相互作用;相互交流;干扰;
So, you click down on the ALS tab there. 比如你点击“肌萎缩性侧索硬化症”的标签,
tab:n.标签;签条;突耳;凸舌;v.说(某人)适合于(某工作或角色);
I'm taking three drugs to manage it. Some of them are experimental . 我使用了三种药物来控制它,其中有一些是实验性的。
experimental:adj.实验的;根据实验的;试验性的;
I can look at my constipation , how to manage it. 我还可以关注我的便秘问题,看看如何治疗。
constipation:n.[临床]便秘;受限制;
I can see magnesium citrate . And the side effects from that drug all integrated in the time in which they're meaningful. 我可以查看柠檬酸镁, 以及在有意义的时间范围内 所有副作用的效果。
magnesium:n.[化学]镁; citrate:n.柠檬酸盐;
But I want more. 然而,我还想要更多。
I don't want to just look at this cool device . I want to take this data and make something even better. 我不想仅仅只是查看这些数据, 我希望能用这些数据去发明一些更好的应用。
device:n.装置;策略;图案;
I want my brother's center of the universe and his symptoms and his drugs, and all of the things that interact among those, the side effects, to be in this beautiful data galaxy that we can look at in any way we want to understand it. 我要使得我弟弟是宇宙的中心, 而他的所用症状、所有用药、 以及所有作用于其中的因素、 副作用,都成为漂亮的数据星系围绕在他周围。 我们可以用任何我们希望的方式去理解它。
galaxy:n.银河;[天]星系;银河系;一群显赫的人;
So that we can take this information and go beyond just this simple model of what a record is. 这样,我们就可以利用这些信息, 超越数据记录 这个简单的模型。
I don't even know what a medical record is. 我甚至不需要知道什么是医疗记录。
I want to solve a problem. I want an application . 我只要知道如何治疗疾病,我只需要知道如何应用这些数据。
application:n.应用;申请;应用程序;敷用;
So, can I take this data -- rearrange yourself, put the symptoms in the left, the drugs across the top, tell me everything we know about Steven and everyone else, and what interacts . 因此,我可以重新整合这些数据, 把症状放在左边,药物列在上方, 告诉我关于斯蒂夫和其他所有人的信息, 以及哪些因素在交互作用。
rearrange:v.重新排列;重新整理; interacts:vi.互动;相互作用(interact的三单形式);交互;
Years after he's had these drugs, 在他服用那些药物的几年之后,
I learned that everything he did to manage his excess saliva , including some positive side effects that came from other drugs, were making his constipation worse. 我才知道他用来控制口水过量的所有方法, 包括其他一些曾起过积极副作用的药物, 都在同时恶化他的便秘问题。
excess:n.超过,超额;过度,过量;无节制;adj.额外的,过量的;附加的; saliva:n.唾液;涎;
And if anyone's ever had severe constipation, and you don't understand how much of an impact that has on your life, yes that was a pun . 所以,如果有人有过严重的便秘, 并且你不知道这会给你的生活带来什么样的影响, 是的,那是一个双关语。
severe:adj.极为恶劣的;十分严重的;严厉的;苛刻的; impact:n.影响;效果;碰撞;冲击力;v.挤入,压紧;撞击;对…产生影响; pun:n.双关语;v.使用双关语
You're trying to manage these, 你正在努力去控制这些问题,
And this grid is available here, and we want to understand it. 而这个表格就在这里, 我们希望去理解它。
grid:n.网格;格子,栅格;输电网;
No one has ever had this kind of information. 没有人有过这样的信息,
So, patients have this. We're for patients. 而这里的病人们有,我们这样做就是为了这些病人。
This is all about patient health care . There was no doctors on our network. 这些都是关于病人的保健信息,我们的网络里没有医生。
health care:n.卫生保健;
This is about the patients. 这些全都是关乎于病人。
So, how can we take this and bring them a tool that they can go back and they can engage the medical system? 那么,我们如何利用这些来给他们创造一个工具, 让他们能够回到家里,自己参与到医疗系统中来呢？
engage:v.吸引,占用;使参加;雇佣;使订婚;预定;
And we worked hard, and we thought about it and we said, "What's something that we can use all the time, that we can use in the medical care system, that everyone will understand?" 我们为此努力工作,同时我们一直在思考, “有什么东西是我们可以可持续地利用, 应用在医疗系统中, 并且大家都能够理解？”
So, the patients print it out, because hospitals usually block us because they believe we are a social network. 这样,病人可以把它打印出来, 因为医院通常都屏蔽我们, 他们认为我们是一个社交网络。
It's actually the most used feature on the website. 但这实际上是这个网站应用最多的功能。
Doctors actually love this sheet , and they're actually really engaged . 医生们其实很喜欢这个数据单,它在实际应用中真的能派上用场。
sheet:n.薄板;床单;纸张;报纸;v.覆盖;展开;给…铺床单;铺开;adj.片状的; engaged:adj.已订婚的; v.吸引住; (engage的过去分词和过去式)
So, we went from this story of Steven and his history to data, and then back to paper, where we went back and engaged the medical care system. 我们从网站上斯蒂夫的故事以及他的数据历史, 回到纸版信息, 结合进入传统的医疗系统。
And here is another paper. 这是另一种纸版信息。
This is a journal , PNAS. 这是一本杂志——PNAS。
journal:n.杂志;日记;日志;(用于报纸名)…报;
I think is the Proceedings of the National Academy of Science of the United States of America . 这是美国国家科学院院刊 的缩写。
Proceedings:n.诉讼;行动(proceeding的复数形式);会议记录;议程; Academy:n.学院;研究院;学会;专科院校; United States of America:un.美利坚合众国;
You've seen multiple of these today, when everyone was bragging about the amazing things they've done. 你已经看过很多类似的东西: 人们吹嘘他们完成了一件多么了不起的奇迹。
multiple:adj.数量多的;多种多样的;n.倍数; bragging:v.吹嘘;自吹自擂;(brag的现在分词)
This is a report about a drug called lithium . 这篇文章报道了一种药,叫做锂。
lithium:n.锂(符号Li);
Lithium, that is a drug used to treat bipolar disorder , that a group in Italy found slowed ALS down in 16 patients, and published it. 这个药物以前是用来治疗躁郁症的。 一个意大利研究小组发现, 这个药在16个病人中减缓了肌萎缩性侧索硬化症的发病,就发表了这篇文章。
bipolar disorder:n.双相型障碍;躁狂抑郁性精神病;
Now, we'll skip the critiques of the paper. 现在,我们跳过对这篇文章本身的评论,
critiques:评论;
But the short story is, if you're a patient, you want to be on the blue line. 来关注一个小故事:如果你是一个病人, 你希望自己在这条蓝线上。
short story:短篇小说(指一万字以内的小说);
You don't want to be on the red line, you want to be on the blue line. 你不希望自己在红线上,你希望自己在蓝线上。
Because the blue line is a better line. The red line is way downhill , the blue line is a good line. 因为蓝线表示更好的身体状况, 红线表示在走下坡路,而蓝线表示状况良好。
downhill:adv.下坡;向下;每况愈下;adj.下坡的;容易的;n.下坡;滑降;
So, you know we said -- we looked at this, and what I love also is that people always accuse these internet sites of promoting bad medicine and having people do things irresponsibly . 因此,你知道我在说什么——我们关注这些数据,我发现, 人们总是指责这些网站在促使他们使用不好的药物, 不负责任地指导病人做这做那。
accuse:v.控告;谴责;控诉; sites:n.网站(site的复数);遗址,举办地点;v.使...位于(site的单三形式); promoting:v.促进;推动;促销;提升;晋升;(promote的现在分词) irresponsibly:adv.不负责任地;不可靠地;
So, this is what happened when PNAS published this. 这就是PNAS发表这篇文章之后所发生的故事。
10 percent of the people in our system took lithium. 我们系统中有百分之十的病人使用了“锂”,
10 percent of the patients started taking lithium based on 16 patients of data in a bad publication . 他们根据这篇烂文章中16个病人的数据, 就开始使用这种药物。
publication:n.出版物;发表;公布;发行;
And they call the internet irresponsible . 他们控诉互联网的不负责任。
irresponsible:adj.不负责任的;不可靠的;
And here is the implication of what happens. 这暗示了接下来发生的状况。
implication:n.含意;可能的影响(或作用、结果);暗指;(被)牵连;
And there is this one guy, named Humberto, from Brazil , who unfortunately passed away nine months ago, who said, "Hey listen. Can you help us answer this question? 这是其中的一个人,叫做汉伯特,来自巴西。 他很不幸地在九个月前去世了。 他说,“嘿听着,你们能帮我们解答这个问题吗？
Brazil:n.巴西(拉丁美洲国家); unfortunately:adv.不幸地;
Because I don't want to wait for the next trial, it's going to be years. 因为我不想等到下一轮试验,那要好多年后了,
I want to know now. Can you help us?" 我希望现在就知道结果。你能帮助我们吗？”
So, we launched some tools, we let them track their blood levels. 于是,我们就发明了一些工具,我们让他们跟踪记录他们到血压,
launched:v.发射;发起;开展;开始;(launch的过去式和过去分词) track:n.小道;足迹;车辙;轨道;v.追踪;跟踪;
We let them share the data and exchange it. 并分享和交换数据。
exchange:n.交换;交流;交易所;兑换;v.交换;交易;兑换;
You know, a data network. 你知道的,就是建立一个数据网络。
And they said, you know, "Jamie, PLM, can you guys tell us whether this works or not?" 而后,他们说,“吉米,PLM? 你们能不能告诉我们这个药到底有没有用？”
And we went around and we talked to people, and they said, "You can't run a clinical trial like this. You know? 于是我们走访病人, 他们说,“你知道吗,你们无法建立临床试验,
clinical:adj.临床的;诊所的;
You don't have the blinding, you don't have data, it doesn't follow the scientific method. 你们没有双盲试验,你们没有数据, 这样做根本不是科学的方法。
scientific:adj.科学的,系统的;
It's never going to work. You can't do it." 这样是没用的,你们无法做到。”
So, I said, "Okay well we can't do that. Then we can do something harder." 于是我说,“好吧,我们无法做到,那么我们就做更难的事。”
(Laughter) （笑）
I can't say whether lithium works in all ALS patients, but I can say whether it works in Humberto. 我无法断言“锂”是否能够治疗肌萎缩性侧索硬化症, 但我可以知道它对于汉伯特是否有用。
And I bought a Mac about two years ago, I converted over. 两年前我买了一个苹果电脑,转换了操作系统,
And I was so excited about the new feature of the time machine that came in Leopard . And we said, cause it's really cool, 我特别喜欢其中的新功能——时间机器。 它出现于雪豹系统中。我们说,它太酷了！
time machine:n.时间机器; Leopard:n.豹;美洲豹;
You can go back and you can look at the entire history of your computer, and find everything you've lost, and I loved it. 你可以退回到从前,可以一览你的电脑的所有历史记录, 找回所有你丢失的东西,我太喜欢这个功能了。
And I said, " What if we built a time machine for patients, except instead of going backwards, we go forwards. 于是我想,如果我们为病人建立一个时间机器, 但它不是回到从前,相反地,我们让它向前走,
What if:如果…怎么办?
can we find out what's going to happen to you, so that you can maybe change it?" 那么我们能不能预知在病人身上将发生什么, 并且是否可能去改变这个结果？
So, we did. We took all the patients like Humberto, 于是我们就去尝试了。我们聚集了所有象汉伯特那样患者的資料
That's the Apple background, we stole that because we didn't have time to build our own. This is a real app by the way . 这是苹果的背景,由于没有时间做我们自己的背景,我们就直接借用了。 这已经是一个真的应用
by the way:顺便说一下;
This is not just graphics . 而不仅仅是图示,
graphics:n.[测]制图学;制图法;图表算法;
And you take those data, and we find the patients like him, and we bring their data together. And we bring their histories into it. 我们取出相关数据,找到和他一样的病人, 然后把他们的数据集合在一起,把他们的病史也放在一起。
And then we say, "Well how do we line them all up?" 而后我们想,那么我们怎么把组织这些数据罗列起来呢？
So, we line them all up so they go together around the meaningful points, integrated across everything we know about the patient. 于是我们把数据 围绕那些有意义的数据点组织起来, 综合了所有关于这个病人的信息。
Full information, the entire course of their disease. 这就是他们患病的整个过程,
And that's what is going to happen to Humberto, unless he does something. 也正是汉伯特将要面对的病情, 除非他额外采用了别的措施。
And he took lithium, and he went down the line. 而他服用了“锂”,于是他的病情比这个预期恶化了,
And it works almost every time. 每次服用过后,几乎毫无例外地出现这个结果。
Now, the ones that it doesn't work are interesting. 那么,那些没有恶化的情况就非常值得关注。
But almost all the time it works. 不过,绝大多数时候都维持了恶化的规律。
It's actually scary. It's beautiful. 这看起来完美得令人触目惊心。
So, we couldn't run a clinical trial, we couldn't figure it out. 因此,虽然我们不能通过临床试验来得出结论,
But we could see whether it was going to work for Humberto. 但我们可以预知这个药对汉伯特是否有效。
And yeah, all the clinicians in the audience will talk about power and all the standard deviation . We'll do that later. 我知道,在座的临床医生们都会说到强度 和标准差,我们等等也会谈到这点。
clinicians:临床医生(clinician的名词复数); standard deviation:n.标准差;标准偏差;
But here is the answer of the mean of the patients that actually decided to take lithium. 但是,让我们先来看看 那些决定要服用“锂”的病人 的平均结果。
These are all the patients that started lithium. 这些是所有开始使用“锂”的病人。
It's the intent to treat curve . 统计的意图是绘出治疗曲线。
intent:n.意图;目的;含义;adj.专心的;急切的;坚决的; curve:n.曲线;弯曲;曲面;弧线;v.(使)沿曲线移动;呈曲线形;
And you can see here, the blue dots on the top, the light ones, those are the people in the study in PNAS that you wanted to be on. And the red ones are the ones, the pink ones on the bottom are the ones you didn't want to be. 于是你可以看到,上面淡淡的蓝色的点, 是那篇PNAS的文章里研究的病人, 也就是大家都希望得到的结果。而下面那些红色的、 粉色的,就是大家都避之惟恐不及的状况。
And the ones in the middle are all of our patients from the start of lithium at time zero, going forward, and then going backward . 中间的数据都是来自我们网站的病人, 以开始服用“锂”的时候为时间零点, 正数代表服用后,负数代表服用前。
backward:adj.向后的;反向的;发展迟缓的;adv.向后地;相反地;
So, you can see we matched them perfectly, perfectly. 你可以看到,这些数据完美地一致,
Terrifyingly accurate matching. 令人惊奇地一致。
Terrifyingly:adv.惊人地;令人害怕地; accurate:adj.精确的;
And going forward, you actually don't want to be a lithium patient this time. 从服用之后的效果看,这回你就不再会希望自己是服用“锂”的病人了。
Your actually doing slightly worse, not significantly , but slightly worse. You don't want to be a lithium patient this time. 因为服药之后,你的病情变得有些恶化了,虽然并不是严重恶化, 但还是略有恶化。这次你就不希望自己是使用这个药物的病人了。
slightly:adv.些微地,轻微地;纤细地; significantly:adv.意味深长地;值得注目地;
But you know, a lot of people dropped out, the trial, there is too much drop out. 但是,在这个过程中,很多病人半途放弃了, 数量非常地多。
Can we do the even harder thing? Can we go to the patients that actually decided to stay on lithium, because they were so convinced they were getting better. 我们能不能做一件更有难度的事呢？ 我们能不能去找那些决定持续使用“锂”的病人, 因为他们非常坚信他们的病情会得到好转。
convinced:adj.坚信; v.使确信; (convince的过去分词和过去式)
And we asked our control algorithm, are those 69 patients, by the way you'll notice that's four times the number of patients in the clinical trial, can we look at those patients and say, "Can we match them with our time machine to the other patients that are just like them, and what happens?" 于是我们去查询控制算法的结果, 有69位病人坚持下来,顺便说一句, 你可能会注意到,这个数目是临床试验病人数目的四倍。 我们看着这些数据,就在想, 我们是否能用我们的时光机器, 将他们的数据与其他与他们相似的病人比较, 看看会发生什么？
And even the ones that believed they were getting better, matched the controls exactly. Exactly. 结果是,即使是那些相信他们会有所好转的病人, 他们的结果还是与控制组相同。完全相同。
And those little lines? That's the power. 那些短线是什么呢？那就是强度
So, we -- I can't tell you lithium doesn't work. I can't tell you that if you did it at a higher dose of if you run the study proper, I can tell you that for those 69 people that took lithium, 于是,我不能告诉你“锂”没有用, 我也不能告诉你如果你使用了更高的剂量, 就更加准确。我只能告诉你, 对于那69名使用了“锂”的病人,
they didn't do any better than the people that were just like them just like me, and that we had the power to detect that at about a quarter of the strengths reported in the initial study. 他们并没有比类似于他们的病人有明显的改善。 象我这样的。 (指普通的人) 我们用了原来报告中使用的1/4的剂量 检测出这个结论
detect:vt.察觉;发现;探测; initial:adj.最初的; n.(名字的)首字母; v.用姓名的首字母作标记(或签名)于;
And we did that one year ahead of the time when the first clinical trial funded by the NIH for millions of dollars, failed for futility last week, and announced it. 我们比美国国家卫生研究院赞助第一次临床试验还早一年 就完成了这个测试。 而他们花数百万美元赞助的试验, 却在上周刚刚宣布用那药没有功效
funded:adj.提供资金的;v.提供资金;积存;提供资金偿付的本息;(fund的过去式); futility:n.无用;徒劳;无价值;
So, remember I told you about my brother's stem cell transplant. 所以,记得我曾告诉过你们我弟弟移植干细胞的事。
I never really knew whether it worked. 我从来都没有真正了解过这对他是否有效。
And I put 100 million cells in his cisterna magna , in his lumbar cord, and filled out the IRBs and did all this work, 是的,我在他的小脑延髓池和腰部脊髓 植入了一亿个细胞, 并注满了IRBs,完成了这所有的工作,
cisterna:n.[解]池; magna:n.麦格纳(全名为麦格纳国际,为世界第三大汽车零部件供应商); lumbar:n.腰椎;腰神经;腰动脉;adj.腰的;腰部的;
And I never really knew. 我却根本不知道结果如何。
And how did I not know? 为什么我会不知道呢？
I mean, I didn't know what was going to happen to him. 我是说,我不知道接下来他会发生什么状况。
And I actually asked Tim, who is the quant in our group -- 我还询问了蒂姆,他是我们组的数据分析师——
quant:n.船桨;数量分析专家;vt.用篙撑;vi.用篙撑船;
We actually searched for about a year to find someone who could do the sort of math and statistics and modeling in healthcare, couldn't find anybody. So, we went to the finance industry. 事实上,我们花了一年时间去找一个 能做医疗数据的数学分析、统计分析以及建模的人, 但一个人都找不到。于是,我们把目光投降金融业,
statistics:n.统计数字;统计资料;统计学;(statistic的复数) finance:n.财政,财政学;金融;v.负担经费,供给…经费;
And there are these guys who used to model the future of interest rates, and all that kind of stuff . 那里有一帮人,对利率走向建模, 以及做其他一些类似的项目。
stuff:n.东西:物品:基本特征:v.填满:装满:标本:
And some of them were available. So, we hired one. 他们中有一些人那时正没事做,于是我们就雇了一个。
(Laughter) （笑）
We hired them, set them up, assisting at lab. 我们雇佣了这些人,安顿好他们,让他们在实验室帮忙。
I I.M. him things. That's the way I communicate with him, is like a little guy in a box. I I.M.ed Tim. I said, "Tim can you tell me whether my brother's stem cell transplant worked or not?" 我发送即时消息给他。这就是我们交流的方式, 像与盒子里的一个小人对话。我给他发送即时消息说, “蒂姆,你能告诉我我弟弟的干细胞移植 是否有效吗？”
And he sent me this two days ago. 于是两天前,他发送了这个给我。
It was that little outliers there. You see that guy that lived a long time? 这里面有一些异常值。你看到那个活了很久的人吗？
outliers:n.[分化]异常值;离群值;离开本体的东西;局外人(outlier的复数);
We have to go talk to him. Because I'd like to know what happened. 我们得去和他谈一谈,因为我希望知道其中的原因。
Because something went different. 因为在他身上,有一些因素变化了,
But my brother didn't. My brother went straight down the line. 但这并没发生在我弟弟身上,我弟弟的状况沿着这条线急转直下。
It only works about 12 months. 这个版本只记录了12个月。
It's the first version of the time machine. 这是时间机器的第一个版本,
First time we ever tried it. We'll try to get it better later. 杰米 海伍德:我弟弟激发出的好点子
12 months so far. 到目前为止只有12个月。
And, you know, I look at this, and I get really emotional . 我看着这些 我变得非常激动。
emotional:adj.情绪的;易激动的;感动人的;
You look at the patients. You can drill in all the controls. 你看看这些病人。你可以尝试所有的控制比较,
You can look at them, you can ask them. 你可以看到他们的变化,你可以询问他们的情况。
And I found a woman that had -- 我还发现一个女病人——
We found her, she was odd because she had data after she died. 我们发现她的异常, 因为在她死后还有更新数据。
odd:adj.古怪的;奇数的;n.奇数;
And her husband had come in and entered her last functional scores, because he knew how much she cared. 原来是她的丈夫登陆了帐号,并输入她最后的功能数据, 因为他知道她生前多么在乎这个网站。
functional:adj.功能的;
And I am thankful. 我很感激。
I can't believe that these people, years after my brother had died, helped me answer the question about whether an operation I did and spent millions of dollars on years ago, worked or not. 我无法相信这些人们, 他们在我弟弟死后那么多年, 还在帮助我解答 数年前我花了百万美元做的那个手术 是否有效的问题。
And I wished it had been there when I'd done it the first time. 在我初次建立这个网站的时候, 我希望它早已存在。
And I'm really excited that it's here now. 而现在,我为它的存在感到非常激动,
Because the lab that I founded has some data on a drug that might work. 因为我建立的实验室获得了一些 有希望的药物的数据,
And I'd like to show it. 我希望能展示它们。
I'd like to show it in real time , now. 我希望现在就能实时地展示它们。
real time:adj.实时的;接到指示立即执行的;
And I want to do that for all of the diseases that we can do that for. 我想为所有我们能研究的疾病都展开这样的研究。
diseases:n.[医]病(disease的复数);[医]疾病;[植保]病害;疾病种类;
I've got to thank the 45,000 people that are doing this social experiment with us. 我得感谢这45,000个参与这个 社会实验的病人。
There is an amazing journey we are going on to become human again, to be part of community again, to share of ourselves, to be vulnerable , and it's very exciting. So, thank you. 这是一个我们一起经历的传奇旅程, 在这一路上,我们再次成为人类, 再次融入这个社区, 分享我们自己,变得敏感, 这是十分令人激动的。所以,谢谢你们大家。
vulnerable:adj.易受攻击的,易受…的攻击;易受伤害的;有弱点的;
(Applause) （鼓掌）