評論
打印
Patient data
病人數據
Caring and sharing
關愛和分享
A controversial NHS database will benefit patients—eventually
頗有爭議的英國國民保健服務數據庫將最終惠及病人
NESTLED among offers for tree trimmers, cleaners and slankets, the English may have noticed a leaflet with “important information” about their health records last month. More likely, they did not. Though the National Health Service says it sent one to every household, over 70% of the public do not remember getting it. Those who did pick it off the carpet learned of a plan to collect patient data from GPs. Slated to begin in April, it has now been shelved for six months so that a more robust campaign can be mounted to convince the public of its merits.
上個月，從事修剪樹木、清潔工作或是居家的英國人可能會注意到有一張傳單記錄著他們健康情況的重要信息。更多的是，他們可能沒有注意到這一現象。盡管英國國民保健服務機構稱他們給每戶家庭都送了一張健康信息單，超過70%的公眾不記得收到過。那些在門口的墊子上撿到健康信息單的人們了解到，需要通過全科醫生收集病人數據。盡管既定4月份開始啟動，這一計劃現在已經被擱置了6個月，因此，可能會利用一場更加激烈的活動讓公眾認識到該信息單的優越性。
The programme, called care.data, attracted little attention when it was set up as part of the Health and Social Care Act of 2012. Many patients now feel it has been thrust upon them with little consultation. Critics have stoked fears that the database might be hacked or misused by businesses or other third parties, which can petition the government for access. Despite safeguards to keep identifiable data confidential, GPs worry patients will withhold information from them. Many will likely opt out of the scheme, which almost two-thirds of the public opposes.
這一項目稱為關愛數據，最初作為2012年健康和社會保健法案設立時并未引起人們的關注。許多病人現在認為這項法案沒有咨詢他們的意見就強加在了他們的身上。評論家們擔心該數據庫被黑客竊取或者被濫用于商業以及被第三方所利用，因為這些公司或第三方可以向政府申請訪問權限。盡管保護措施確保可識別的數據非常隱秘，但是全科醫生擔心病人將從中撤走其個人信息。幾乎有三分之二的公眾反對該項目，很多人可能決定從中退出。
The NHS certainly has a public-relations problem, but its central case is strong. Data on patients in hospital are already collected by the health service—and have never been seriously breached, say officials. These have helped it to allocate funds and keep accurate books. The information has also helped to save lives, says Tim Kelsey, the NHS director for patients and information. In Bristol, data showed an unusually high death rate during paediatric surgeries in the early 1990s, a problem since corrected. In Mid Staffordshire the numbers signalled a catastrophic breakdown in care between 2005 and 2009, leading to a government inquiry, though not before hundreds of patients died.
國民保健服務有處理公眾關系的問題，但是其核心案例非常強大。保健服務系統已經搜集了醫院的病人數據—官員說并未遇到非常強烈的反對情況。這些案例幫助該服務系統籌集資金，并保證有關書籍的正確性。國民保健服務的病人與信息部主任蒂姆·凱爾西稱，這一也有利于挽救病人的生命。在布里斯托爾收集的數據表明，20世紀90年代早期，兒科手術的死亡率非常高，自從改正后就出現了這個問題。斯塔福德郡中部的數據顯示2005年至2009年，社會關愛遭受了災難性的崩潰，成百上千的病人去世，從而引起政府政府關注進行調查。
Information gleaned from GPs would help the NHS administer the system better. But the greatest potential lies in linking the two datasets. People tend to think of health care as a one-off episode, says John Appleby of the King's Fund, a health-policy think-tank. But most care is consumed by people with chronic conditions, like diabetes, who move between GPs' offices and hospital wards. Without data from family doctors it is impossible to track patients and figure out which treatments produce the best long-term results.
通過全科醫生收集的信息可幫助國民保健服務更好地管理這一系統。但是最大的潛力是連接兩大數據組。衛生政策智囊團——國王基金——的約翰·阿普比人們常認為健康保健是一次性事件，但是大多數的醫療關懷都用在了患有慢性疾病的人身上（如糖尿病患者），他們往返于全科醫生辦公室和醫院病房之間。沒有來自家庭醫生的數據資料，就沒法跟蹤病人并了解哪種治療方式能夠產生最佳的長期的治療效果。
Few countries do this well, but Britain's NHS numbers, which are assigned to each patient, give it an advantage. Indeed, within its own (present) borders it has a model worth emulating. Scotland gathers all data on diabetes patients into a central database and shares it around. One result has been a 40% drop in amputation rates. The Scots are now looking to keep diabetes patients out of hospital, where they cost over ￡300m ($500m) a year. Put another way, they want to know what is and is not working in GPs' offices.
很少有國家能夠在這一領域取得成績，但是英國的國民保健服務數據指定到每個病人，也是有其優勢的。確實，在其范圍之內，這一模式值得仿效。蘇格蘭收集了糖尿病患者的所有數據輸入到中心數據庫中，并和其他地區分享。其中之一的結果就是截肢率下降了40%。蘇格蘭人現在希望能讓糖尿病患者離開醫院，因此他們每年需要耗費3億英鎊（5億美元）。但是另一方面，他們也想知道全科醫生辦公室的優點和缺點。
The more data collected, the more useful it is, but not everyone will be persuaded to hand their information to the NHS. Some patients will no doubt conclude that the potential benefits of care.data do not trump their concerns. Either way they will get a healthy debate.
收集的信息越多越有用，但是不是能夠說服所有人都同意將其信息交給國民保健服務機構。有些病人會毫不猶豫地斷定關愛數據的潛在福利不會解決他們的顧慮。換句話來說，他們將進行一場關于健康的辯論。 譯者：毛慧 校對：王紅兵
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