I originally intended the topic of this first post to be uplifting, about the power which the public now has as a direct result of the Digital Age (despite government attempts to censor it and just plain old rewrite history). Unfortunately, I’m instead going to have to write about Big Society’s latest faceplant – the amazing mishandling of the Care.Data. agenda.
Now, in principle the Care.Data initiative is aimed at compiling everyone’s medical data to allow more appropriate treatments across the board, better understanding of health trends, the sainted virtue of efficiency and lots of other lovely sounding things which can be read about in full glossy corporatised language here. Sounds good, right? Well, yes it does until you open their lovely little leaflet here. Take a moment to wade through all the happy-talk. Take a few moments to shake off the soporific miasma of obedience which the advertising spiel induces. Now let’s look at two rather worrying points.
First, I’d like to bring your attention to the Introduction section of Page 2 on the PDF.
“We sometimes release conﬁdential information to approved researchers, if this is allowed by law and meets the strict rules that are in place to protect your privacy.”
So who are these researchers that they’re going to release the information to without your consultation? If they’re ‘approved’, who does the ‘approving’ and what for? I’ll come on to the strict rules which are protecting our privacy in a minute. But let’s not abandon this point: the leaflet has some very woolly wording here which effectively means that anyone could buy this data. They imply that it’s going to be medical researchers, but it could be market researchers. Even if it is medical researchers, what’s to say that they’re not going to be working for an Insurance Company? Given that the NHS is currently captained by Jeremy Hunt, a man who once helped Daniel Hannan to write a book which described the institution as a ’60 year old mistake’ and seems fervently determined to privatise healthcare, it’s not outrageous to imagine that the government intends to eventually use Care.Data to sell private medical records to Insurance companies – thus allowing said companies to charge higher premiums to people with complex medical histories. But our privacy is protected by ‘strict rules’ isn’t it?
Well, not really.
“We will use information such as your postcode and NHS number to link your records from these different places.”
Well, that’s okay then. Except of course that this data isn’t terribly secure. In a post-Snowden world the revolving door of information between government agencies and corporations has been revealed to be worse than the most paranoid imaginings of conspiracy theorists. The idea that Insurance companies wouldn’t be able to reverse engineer your identity from this information, given how much influence they have, is pretty laughable.
But then the government know that, don’t they? Otherwise they wouldn’t be making this an automatic sign-up system which you have to opt out of (see pages 3-4 of the leaflet). And to opt out of it, you’d have to know about it. And dispersal of information on this issue has been very poor.
We haven’t even got to the worst of it yet.
Up to this point the whole thing was a bit iffy, a bit suspicious, a bit below-the-belt. February 2014 saw a development which made the whole situation a lot more serious. It was declared that French-owned IT company ATOS would be responsible for the administration of Care.Data. Let’s leave aside the bad form of a government which constantly tries to stir up international-phobia and cries about not having enough money using a corporation which doesn’t pay tax here. Anyone who follows politics even casually will know of the horrendous record of ATOS. ATOS were first put in place by New Labour, and then endorsed by the unelected government which followed. Apologists for the government have argued that the government had no choice but to maintain the ATOS contract or kick the previous government’s £200 million investment, padding it out with the usual narrative about how terrible Welfare spending had ruined the country (not crony capitalism or disastrously deregulated banks, honesty guv). This ‘strapped for cash, stuck with it’ seems a bit strange given that the same government proceeded to give tax breaks to the rich, open tax loopholes for corporations and hand First Group and G4S new contracts despite the fact that they’d already cost the government gobsmacking sums in failures and general refusal to pay tax. Both have lobbied the Tory party. But this is an aside.
The government could have got rid of ATOS at the beginning. They did not. Since then, ATOS has mismanaged the WCA they were charged with to a stunning extent. Reports of their staff treating vulnerable claimants with extreme rudeness, brutality and threats abound. Indeed, the ATOS procedures have been found unlawful on the basis of discrimination on more than one occasion – not that this has stopped the current government from using them. Furthermore, the government themselves admitted that between January and November 2011 10,600 people who had been through the ATOS WCA had died not long afterwards. After this the government has worked hard to occlude actual figures from emerging, but the point is clear: ATOS is a terrible company to be trusted with anything medical. Whether because of incompetence or – more likely – because of a right-wing ideological hatred of the vulnerable/disabled/people who can’t work for a corporate interest is an important issue, but secondary to the main issue. This criminal company should not be allowed another healthcare contract of any sort. Indeed, the government and ATOS themselves are currently trying to blame each other for the Disabled Genocide whilst ATOS try to scramble out of the contract and the government try to seize the initiative and drop them.
But the infighting all seems a bit absurd given that they’ve already made friends again and decided to collaborate together on Care.Data.
Care.Data really could be a good thing. But in the one hand, we have a government which promised to ringfence the NHS ans then immediately began to dismantling it. A government which dances to corporate tunes (Google ‘Leader’s Group’ for a nasty shock). On the other hand we have a contractor with a proven record of abuse, malpractice and immorality. Put them together… do you think your data is safe?