Data With the Power To Help Heal Patients
病人取得醫療資訊有助於治療
By Steve Lohr

Steven Keating’s doctors view him as a citizen of the future.
史蒂芬．基亭的醫師把他看成未來的國民。

A scan of his brain eight years ago revealed a slight abnormality – nothing to worry about, he was told, but worth monitoring. And monitor he did, reading and studying about brain structure, function and wayward cells, and obtaining a follow-up scan in 2010, which showed no trouble.
八年前他的腦部掃描檢查發現輕微的異常－醫師告訴他，不需要擔心，但最好繼續追蹤。他真的追蹤了，並閱讀和研究有關腦部結構、功能和不規則細胞的資訊，並在2010年做了追蹤掃描，結果沒問題。

But he knew from his research that his abnormality was near the brain’s olfactory center. So when he started smelling whiffs of vinegar last summer, he suspected they might be “smell seizures.”
不過，他從他的研究得知，他的異常位置靠近腦部的嗅覺中樞。因此，當他去年夏天開始聞到醋的味道，他懷疑也許是「嗅覺癲癇發作」。

He pushed doctors to conduct an M.R.I., and three weeks later, surgeons in Boston removed a cancerous tumor the size of a tennis ball.
他催促醫師為他做「核磁共振造影」檢查，三周後，波士頓的外科醫師切除了一顆網球大的癌腫瘤。

Mr. Keating, a 26-year-old doctoral student at the Massachusetts Institute of Technology’s Media Lab, has pushed and prodded to get his medical information, collecting about 70 gigabytes of his own patient data. His case points to what medical experts say could be gained if patients had full access to their medical information. Better-informed patients, they say, are more likely to take better care of themselves, comply with prescription drug regimens and even detect early-warning signals of illness, as Mr. Keating did.
26歲的基亭是麻省理工學院媒體實驗室的博士生，他一再要求取得他的醫療資訊，收集了大約70 gigabytes他本人的病歷資訊。他的案例剛好切中醫學專家所說的，如果病人完全取得他們的醫療資訊，可以有什麼收穫。他們說，所知較多的病人可能更能照顧自己，遵照醫師處方服藥，甚至像基亭一樣，發現疾病的早期警訊。

“Today he is a big exception, but he is also a glimpse of what people will want: more and more information,” said Dr. David W. Bates, chief innovation officer at Brigham and Women’s Hospital.
布萊根婦女醫院創新長大衛．貝茲說：「今天，他是個大特例，但從他身上也可瞥見人們的需求：更多、更多的資訊。」

Some of the most advanced medical centers are starting to make medical data more available. Brigham and Women’s, where Mr. Keating had his surgery, is part of the Partners HealthCare Group, which now has 500,000 patients with web access to some of the data in their health records including conditions, medications and test results.
一些最先進的醫學中心開始讓醫療資訊更容易取得。基亭動手術的布萊根婦女醫院，隸屬於夥伴醫療集團，該集團有50萬名病患可上網查他們的部分病歷，包括病情和檢查結果。

Other medical groups are beginning to allow patients online access to the notes taken by physicians, in an initiative called OpenNotes. More than two-thirds of the patients reported having a better understanding of their health and medical conditions, adopting healthier habits and taking their medications as prescribed more regularly.
另有些醫療集團開始讓病患上網查醫師寫的診斷書，此項計畫稱為「公開診斷書」。逾三分之二病患表示更了解自己的健康和醫療狀況，培養更健康的習慣，並更規律地按照處方服藥。

Nearly five million patients in America have been given online access to their notes.
美國有近500萬病患可上網查看他們的診斷書。

As an articulate young scientist, Mr. Keating had a big advantage over most patients in obtaining his data. He knew what information to request, spoke the language of medicine and did not need help. The information he collected includes the video of his 10-hour surgery, dozens of medical images, genetic sequencing data and 300 pages of clinical documents. Much of it is on his website, and he has made his medical data available for research.
基亭是能言善道的年輕科學家，取得醫療資訊比大部分病人占優勢。他知道要什麼資訊，會說醫學術語，而且不需要協助。他收集的資訊包括他的10小時手術錄影、幾十張醫學影像、基因序列資料和300頁的診療文件。大部分資料放在他的網站上，他提供他的醫療資料供研究用。

Still, he said he encountered a medical culture resistant to sharing data.
不過，他說，他遭遇了不願分享資訊的醫療文化。

“The person with the least access to data in the system is the patient,” he said. “The burden is always on the patient. And it is scattered across many different silos of patient data.”
他說：「在這個體系，最拿不到資料的是病人。負擔總是在病人身上。而且資料散布在很多不同的病歷資料庫。」

Since his diagnosis last summer, Mr. Keating has become an advocate for giving patients all the medical data they ask for.
自從去年夏天診斷出腦瘤後，基亭大力提倡讓病人取得他們要求的所有醫療資料。

An effort to accelerate the adoption of open technology standards in health care, the Argonaut Project, began in December.
為了加速促使醫療體系採用開放式科技標準，「阿爾戈英雄計畫」於去年12月啟動。

One detail in the yearlong study of OpenNotes underlines doctors’ concerns; 105 primary physicians completed the study, but 143 declined to participate.
一項長達一年的「公開診斷書」研究中的一個細項凸顯醫師的顧慮；105位主治醫師完成這項研究，但有143位拒絕參加。

Still, the experience of the doctors in the evaluation seemed reassuring. Only 3 percent said they spent more time answering patient questions outside of visits. Yet knowing that patients could read the notes, one-fifth of the physicians said they changed the way they wrote about certain conditions, like substance abuse and obesity.
不過，接受這項評估的醫師的經驗似乎讓人放心。只有3%的醫師說，他們在看診之外花更多時間回答病人問題。不過，知道病人可能會看這些診斷書，五分之一的醫師說，他們會換個方式記述一些病情，像是濫用藥物和肥胖。

Evidence of the benefit to individuals from sharing information rests mainly on a few studies so far. For example, 55 percent of the members of the epilepsy community on PatientsLikeMe, a patient network, reported that sharing information and experiences with others helped them learn about seizures, and 27 percent said it helped adherent to their medications.
迄今，分享資訊對個別病人有好處的證據，主要存在於一些研究中。例如，病人網站「像我這樣的病人」的癲癇社群成員中，55%表示，與病友分享資訊和經驗，有助於他們認識癲癇發作，27%表示，有助於讓他們按時服藥。

Mr. Keating has no doubts. “Data can heal,” he said. “There is a huge healing power to patients understanding and seeing the effects of treatments and medications.”
基亭毫不懷疑。他說：「資料能治療。了解和看到治療和服藥的效果，對病人有巨大療效。」

Mr. Keating says he believes that people will increasingly want access to their medical data, especially younger people reared on social networks.
基亭說，他相信人們會愈來愈想要取得他們的醫療資料，特別是從小就上社群網站的年輕人。

“This is what the next generation, which lives on data, is going to want,” Mr. Keating said.
基亭說：「這是靠資料而活的下個世代會想要的。」

原文參照：
http://www.nytimes.com/2015/04/01/technology/the-healing-power-of-your-own-medical-data.html

2015-05-05聯合報/G5版/UNITED DAILY NEWS 田思怡譯 原文參見紐時週報十一版上