Cross Talk on the database state

Last time regular Microsoft columnist Mike Cross found himself in his local hospital, he was impressed by its digital imaging technology. Back in the Whittington’s A&E, he is impressed by its access to national records – and unimpressed by a think tank report worried about the information stored in them.

Back to the local A&E, this time with a daughter in tow. Despite its grim setting, North London's Whittington Hospital continues to impress. The paediatric waiting room is clean, cheerful and efficient.

There's a SuperMario computer game to play while we're waiting, and during the examination the doctor manages to extract a smile from a bruised daughter. As it turns out, there’s no reason for worry, or even an X-ray.

Data concern

But the visit is significant for the daughter in one way: it's her debut on the hospital's patient administration system. The admissions clerk registers her by date of birth, name and GP. Of course I can't remember the last one – or, in the heat of the moment, the name of our GP practice. “Um it's up the road past the clock tower...”

“Don't worry, we'll look it up. Just go through and take a seat, please.” A small, everyday triumph for the NHS Personal Demographics System (PDS), which stores such details along with other things patients are unlikely to remember, such as their NHS Number.

Now, call me naïve, but I’d have thought that it’s obvious that if you have a National Health Service you need a national list of patients who are eligible for treatment.  But not everybody agrees.

In a recent, headline-grabbing report on the Database State, the Joseph Rowntree Reform trust gives the PDS (which it unfortunately mis-names) the accolade of amber status, meaning that it “has significant problems, and may be unlawful.”

The JRR trust concedes that patient registers have always existed, but claims that “building registration into many systems and making data available to many people (including patients themselves) puts the model under severe strain.”

And the report points out that there are circumstances when it’s neither possible nor desirable to ascertain the patient’s identity before treating them. “Fresh thinking is clearly needed.”

Well, fresh thinking is always welcome, but let's not get over-excited. The idea that all patients must be identified at all times is a chimera; every A&E has procedures for unconscious arrivals and every GU clinic has procedures for the shy and embarrassed.

But to jump from this position – and from a rightful concern about the security of detailed care records and the NHS Secondary Uses Service – to total anonymity for everybody all the time is ludicrous.

Too much concern

I’m not creating a straw man, here. In one of their main recommendations, the Rowntree authors propose that “everyone should have the right to be treated under any name they wish to use.”

For the obvious flaw that “this will lead to foreigners or even illegal immigrants getting free NHS treatment” they propose two solutions. The first is to live with it - on the ground that granting treatment to all comers would cost “orders of magnitude” less than the NHS’s IT budget and would be “perfectly defensible on both practical and ethical grounds.”

The second solution is for people wanting anonymous healthcare to prove their entitlement without their identity. (Though how this would work without an identity authentication regime, presumably based on biometrics, remains to be seen.)

What both these options ignore is the cost of throwing away the intelligence that would arise from the NHS’s ability to collect national data, and, suitably anonymised, to share it.

For privacy has a cost as well as a benefit. While health informatics systems must always err on the side of privacy (even, in some cases, to the extent of recording no data at all), in the general run of things the balance of public interest will require some use of national data sets.

During the 1945 election campaign, in which the national welfare state was very much an issue, Winston Churchill warned of Labour's NHS plans: "They would have to fall back on some form of Gestapo, no doubt very humanely directed in the first instance." He was wrong to say it then, and we’d be wrong to make similar allegations now.