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首页> 外文期刊>BMJ: British medical journal >How the e-patient community helped save my life
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How the e-patient community helped save my life

机译：e -病人社区如何帮助拯救我的生活吗

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In April 2009 I found myself on the front page of the Boston Globe. A mere cancer patient, I'd written a blog post about my medical record. The Globe's reaction-on page 1-was my first glimpse of a big question: how can a patient say anything about medicine that's worthy of attention? It was the start of an improbable odyssey, leading to speaking engagements at 200 meetings, a Salzburg global seminar on shared decision making, co-chairmanship of the Society for Participatory Medicine, testimony on government policy, events in many countries, and a TEDx talk that is in the top half of most viewed ever and has subtitles in 26 languages. Time and again I find myself wondering what people have heard that draws such interest; I wouldn't have been so bold as to predict it. I think it is because, although I understand science-I love it, and I'm alive because of it-I also sense a substantial disconnect between what patients value and what medicine offers. And this raises the question: we all agree medicine should provide value for money, but who gets to say what value is? I'm not anti-doctor I was saved by brilliant science and top notch clinicians. Diagnosed incidentally with stage IV, grade 4 metastatic renal cell carcinoma, I had bone metastases in my femur (which eventually fractured), ulna, and cranium; five metastases in my lungs; and muscle metastases in my thigh and tongue. Yet six months after diagnosis my treatment ended: I've not had a drop of anything since. A superb surgeon removed my kidney and adrenal gland; another repaired my femur (twice), and a skilled oncology team tended me through a difficult and dangerous treatment. Today I am well. My gratitude goes out to every person who worked on development of the drug and the new protocol I received. Thank you to science, and to every clinician whose training and experience led them to be in the world class team at Beth Israel Deaconess Medical Center that saved my life. My family add their thanks. What is value and who provides it? What does my experience tell us about value? To understand a changing industry we must be clear about the elements that constitute value in medicine. Clearly, my team's achievements are valuable. Let's list some: Awareness of status-I had no idea I was sick; I'd been tired and slowly losing weight, but at age 56 neither seemed a problem. I was unaware of my cancer until doctors spotted a shadow in my lung during a routine shoulderx ray examination.
机译：2009年4月,我发现自己的头版《波士顿环球报》。写一篇关于我的医疗记录。地球是我第一次看到反应1页的一个大问题:如何让一个病人说不出话来值得关注的药呢?开始一个几乎不可能的奥德赛,导致萨尔斯堡在200年会议上演讲全球共享决策研讨会,co-chairmanship社会的参与药,对政府政策、事件的见证在许多国家,和ted演讲的浏览最多的,字幕26种语言。想知道人听说了的兴趣;预测它。理解我爱它,我还活着因为我也意义重大之间的脱节和病人价值药了。都同意药应该提供价值钱,但谁说价值是什么?anti-doctor挽救了我的杰出的科学顶级的临床医生。第四阶段,4级转移性肾细胞骨转移癌,我已经在我的股骨(最终)骨折、尺骨和头盖骨;5在我的肺转移;转移我的大腿和舌头。诊断我的治疗结束后:我没有以来的下降。删除我的肾和肾上腺;修理我的股骨(两次),一个熟练的肿瘤团队往往我度过困难和危险治疗。每个人工作的发展我收到了药物和新协议。科学,每一个临床医生的培训和经验使他们在世界一流团队在贝斯以色列女执事医疗中心救了我的命。是价值和提供吗?经验告诉我们关于价值?改变行业我们必须清楚元素组成的医学价值。显然,我的团队的成就是有价值的。让我们列举一些:status-I没有意识知道我病了;56岁时体重,但是似乎没有一个问题。不知道我的癌症,直到医生发现了一个吗在常规shoulderx射线阴影在我的肺检查。

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