病人数据

　　Caring and sharing

　　关爱和分享

　　A controversial NHS database will benefit patients—eventually

　　颇有争议的英国国民保健服务数据库将最终惠及病人

　　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.

　　上个月，从事修剪树木、清洁工作或是居家的英国人可能会注意到有一张传单记录着他们健康情况的重要信息。更多的是，他们可能没有注意到这一现象。尽管英国国民保健服务机构称他们给每户家庭都送了一张健康信息单，超过70%的公众不记得收到过。那些在门口的垫子上捡到健康信息单的人们了解到，需要通过全科医生收集病人数据。尽管既定4月份开始启动，这一计划现在已经被搁置了6个月，因此，可能会利用一场更加激烈的活动让公众认识到该信息单的优越性。

　　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.

　　这一项目称为关爱数据，最初作为2012年健康和社会保健法案设立时并未引起人们的关注。许多病人现在认为这项法案没有咨询他们的意见就强加在了他们的身上。评论家们担心该数据库被黑客窃取或者被滥用于商业以及被第三方所利用，因为这些公司或第三方可以向政府申请访问权限。尽管保护措施确保可识别的数据非常隐秘，但是全科医生担心病人将从中撤走其个人信息。几乎有三分之二的公众反对该项目，很多人可能决定从中退出。

　　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.

　　国民保健服务有处理公众关系的问题，但是其核心案例非常强大。保健服务系统已经搜集了医院的病人数据—官员说并未遇到非常强烈的反对情况。这些案例帮助该服务系统筹集资金，并保证有关书籍的正确性。国民保健服务的病人与信息部主任蒂姆·凯尔西称，这一也有利于挽救病人的生命。在布里斯托尔收集的数据表明，20世纪90年代早期，儿科手术的死亡率非常高，自从改正后就出现了这个问题。斯塔福德郡中部的数据显示2005年至2009年，社会关爱遭受了灾难性的崩溃，成百上千的病人去世，从而引起政府政府关注进行调查。

　　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.

　　通过全科医生收集的信息可帮助国民保健服务更好地管理这一系统。但是最大的潜力是连接两大数据组。卫生政策智囊团——国王基金——的约翰·阿普比人们常认为健康保健是一次性事件，但是大多数的医疗关怀都用在了患有慢性疾病的人身上（如糖尿病患者），他们往返于全科医生办公室和医院病房之间。没有来自家庭医生的数据资料，就没法跟踪病人并了解哪种治疗方式能够产生最佳的长期的治疗效果。

　　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.

　　很少有国家能够在这一领域取得成绩，但是英国的国民保健服务数据指定到每个病人，也是有其优势的。确实，在其范围之内，这一模式值得仿效。苏格兰收集了糖尿病患者的所有数据输入到中心数据库中，并和其他地区分享。其中之一的结果就是截肢率下降了40%。苏格兰人现在希望能让糖尿病患者离开医院，因此他们每年需要耗费3亿英镑（5亿美元）。但是另一方面，他们也想知道全科医生办公室的优点和缺点。

　　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，但是不是能够说服所有人都同意将其信息交给国民保健服务机构。有些病人会毫不犹豫地断定关爱数据的潜在福利不会解决他们的顾虑。换句话来说，他们将进行一场关于健康的辩论。 译者：毛慧 校对：王红兵