The front door, or rather back door, tactics of the shadowy Health and Social Care Information Centre have achieved a sort of slow-burn blowback over the last few weeks. Kicked off with a junk mail leaflet that aimed to be funky but turned out flakey – eye catching shape, double helix on the front, but the helix unravelling on the inside, and written by a Kafkaesque we who never said who we were, in opaque prose that bizarrely got a Crystal Mark for Clarity from the Plain English Campaign – the idea was to have patients default into allowing the NHS to hoover personally identifiable GP medical records into a vast data silo the size of Russia, generally for the purposes of improving care. But that was only part of it. Buried in the flyer, we also had plans to flog off your data, including sometimes personally identifiable so called red data, but only after the strictest approvals, you understand. Or at least we did. Whether the rest of us did was another matter.
Any talk of NHS Inc flogging off red data was always going to be a red rag to the privacy bull. Once we’s price sheet for your data – note the clever use of service charges: the data may be dirt cheap, but the service isn’t – was discovered, along with a scoping paper that openly discusses using the flogged data to enable ‘insurance companies to accurately calculate actuarial risk so as to offer fair premiums to [their] customers’, the balloon went up, and the cigar, if there ever was one, went out. Red faced officials from we admitted to a PR disaster, and announced that the big data turn on, originally slated for the spring, would be put back six months to the autumn.
Like most who have dabbled at the epidemiological end of medical research, Dr No is ambivalent about the so called care.data project. The scientist in Dr No knows that general practice data is pure research gold. Unlike hospital episode statistics, which are more often than not generated from data entered by low paid operatives, much general practice data is entered by none other than doctors. And then there is the comprehensive nature of the data, across time and population, unbeaten in the world. Truly, the data cup overfloweth. If ever epidemiologists were going to have an orgasm, it would surely be on seeing a set of such cups.
But epidemiological orgasms are only part of the story. The data may be pure gold, but what about the container it is to be kept in? Is the vault secure? And then what about rogue traders with access to the gold, or Kafkaesque elements in government who see nothing wrong with helping insurance companies rig their premiums? Whether by accident or design, sooner or later, the vastness of the data means leaks will happen; not might happen, but will happen. Your personal data, once uploaded, stays uploaded. What if, at some point in the future, a grotesque Idiot Duncan Smith style government decides to join up your care data, which will of course include how much you smoke and drink, with your eligibility for NHS treatment? Absurd? But then, isn’t the eye-wateringly arrogant idea that the default position be that your data is uploaded without your consent also absurd?
The PR crash that caused the data pumping on an industrial scale launch to be put back six months tells us a lot. So too does we’s thinly veiled threat in the flyer for those thinking of being disagreeable: ‘Your choice will not affect the care you receive’ – good, so that’s all right then, isn’t it? Hello? And then there is the arrival on the same day as we’s NHS branded flyer of another NHS branded flyer from Specsavers, a reminder of how far the NHS is already in bed with the private sector. But perhaps the most emblematic of all is the bastard name given to the project: ‘care.data’. Call Dr No old fashioned, but the punctuation mark ‘dot’, the full stop, is a mark that conveys not a marriage but a discontinuity. It marks the end of one thought, and is followed by a gap, before the start of a new thought. The link between ‘care’ and ‘data’, it seems to Dr No, is broken.
So, in his whimsical way, Dr No sees the name care.data as emblematic of we’s – the shadowy un-named outfit behind the project – careless approach to our data. The subliminal unravelling helix image on the inside of the flyer carries the same message: that here is a project that sooner or later will unravel. The data.gold may tempt the scientist in Dr No, but the realist in Dr No also knows that all that glitters is not gold, and that, even worse, all too often the pursuit of gold ends in tears. On balance, a centralised database of personally identifiable medical data is not a good idea.
Sorry guys, nice try, but no cigar, not now, not ever.