Opinion: NHS "care.data": You Are Not a Patient, You Are a Commodity

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Danfox Davies – PPUK Contributor, Student, Hackerspace Leader

Well, what do you know. The government saw fit to send us a message about the NHS and all the wonderful things they are doing for us with it. The Guardian tells us a bit about it here.

I suppose we should be happy. A comprehensive database will help medical researchers stop epidemics before they start. It will help identify side-effects of drugs that didn't show up in testing... Brilliant, that's joined-up thinking, we should praise the technological awakening of our state healthcare system – the time it saves could even be enough to start reversing the fortunes of some of the hospitals the health secretary seems so eager to close. Big Data, it seems at a glance, may just have saved our NHS. Not that we should be proud of it. No, in fact the government seems to have done its level best to ensure we don't even notice the change has happened, whilst still just about claiming they are fulfilling their legal obligations to inform of these changes to our health service.

There's a reason for that.

Take a closer look at one of those 'junk mail' leaflets that you'll be wishing you hadn't simply thrown in the recycling bin. The ones that in 2014, the government saw as sufficient by themselves to deliver the message that what it means to be a patient is changing forever, and because of more than just the sort of technological advancements that they have curiously eschewed in favour of the old-fashioned direct marketing method of delivery that they know full well none of us will give the time of day.

In fact, another article from the Guardian dismantles for us just what has been bundled into this change. It turns out that our medical records, literally warts and all, will be given the lightest of washes of what even the government cannot get away with calling anonymisation, opting instead to call them 'pseudonymised' data, and then pass it not only between NHS departments, but also put it up for sale to pharmaceutical corporations, insurance providers and 'information intermediaries', who could just about be anyone really. Your NHS number, your date of birth, your postcode and your medical details will be there for anyone who wants them. And you won't be able to find out who has it. Do nothing, and your medical data from past, present and forever more, will be easily available to corporations who can hide behind the same veil of anonymity that you have been denied.

Well, you didn't expect Jeremy Hunt to let the opportunity pass for a little more privatisation and monetisation, did you? Any delusions of the sanctity of the NHS these days are as sunk as Nick Clegg's career post-2015. To quote Medconfidential.org, “Unfortunately, NHS England – the commissioning body that now runs the NHS in England – has decided not to include an opt out form with the leaflet and the information in it says you should “speak to your GP practice” if you want to stop your or your family’s confidential medical information being uploaded and passed on. This is misleading.”

Quite right it is. Make an appointment to ask your GP about it, and you're wasting valuable appointment time. In fact, a doctor from Hampshire couldn't find any official form to use, so had to make his own for the public to fill in. And as you'll see if you click that link, the whole scheme seems designed specifically not to be of any use to healthcare professionals themselves.

There is a little hope on the horizon - The Telegraph has spotted a proposed EU law that could make this scheme illegal. But by the time this could get into law, the government will have thrown over £50million at the scheme – something we can ill afford at a time when the same government tells us we need to cut benefits for the vulnerable.

We must prevent this from proceeding.

If you'd rather your insurance firm be able to raise premiums based on what medications you take or consultancy referrals you have had after they have worked out that the one person with that date of birth in that postcode is you, then do nothing. But the rest of us need to get rallying against this. It's not on, makes a mockery of all the NHS stands for and obliterates doctor-patient confidentiality by several measures. Even the things they've said they won't share are subject to a 'review'.

The Pirate Party UK will stand against this inconceivably blatant abuse of power and of Big Data. Will you?


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