2015年经济学人 病人数据 关爱和分享（在线收听）

Patient data

Caring and sharing

A controversial NHS database will benefit patients—eventually

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.

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.

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.

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.

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.

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.