… Gave a very good account of themselves at NO2ID’s public meeting on “The Database State” at Imperial College on Wednesday night. Sir Malcolm Rifkind, Professor Ross Anderson, and Henry Porter tore pieces out of, respectively, the ID card scheme, Connecting for Health, and generalised surveillance in the UK. People keep telling me how good the chairman was as well [blush].
Meanwhile, continuing one of the main themes of the meeting, another wise man, Phil Booth (formerly of the infinite ideas machine, but now too busy being my boss at NO2ID to post, sends an email that I thought I’d share with you all.
From: Phil Booth [mailto:national.coordinator@no2id.net]
Sent: 30 November 2006 19:04
To: Guy Herbert (general.secretary@no2id.net)
Subject: Please don’t send me a Christmas card this year
Importance: HighInstead, use the stamp to send a copy of this letter to your GP:
http://www.TheBigOptOut.org/?page_id=23
Doing this will not only keep your own medical records where they should be – between yourself and your doctor – it will help protect medical confidentiality for everyone by demonstrating that you, like millions of others*, do not consent to your personal health information being uploaded to NHS central systems and made accessible to over 400,000 people – very few of whom would have anything to do with your clinical care.
Opting out in this way will not affect your access to healthcare but, if enough of us do it, it will send a powerful message to those in Whitehall who are currently trying to seize all of everybody’s most private information without even seeking permission.
I was half-kidding about the Christmas card, but I’m deadly serious about opting out. Please read the letter and, if you agree that your privacy (and the privacy of everyone else in your family) is worth the price of a stamp, fill it in and send it to your GP.
And if you could also forward this mail to *your* Christmas card list, 2007 might end up being a very good New Year…
Phil
*The latest Medix poll [pdf here – GH] shows that 52% of GPs would not upload their patients’ records to the spine, and only 13% would be willing to proceed without consent. An even more recent survey by JRRT shows that 53% of patients are opposed to automatic uploading of their records, with only 27% in favour – even though most people haven’t heard about this yet.
You would all be on my Christmas card list, dear readers, if I had any idea who you are (and did not have to sign 2,000 already in my various capacities). You know what to do.
Here is my personal story, as far as medical records are concerned.
I live in Israel, we have a gov. mandated health care system, financed by obligatory deductions (akin to a health care tax). Health services themselves are provided by 4 quasi private health care providing companies (not one NHS as in Britain). Each person is free to choose among the 4, but there is a government defined, uniform package of services that they all provide.
My health care provider is a midsize concern, with about 1/2 a million members. It has, as far as I know, the best central computer system. All my medical records are kept in that computer and are accesible to all doctors or clinics that I visit. I hand them my magnetic membership card, they pass it through a reader, and there it is – all my records on their computer screen. I suppose the records are also accesible to any number of system managers and such,
and persons unknown to me.
It’s very convenient. I don’t have to keep at home an archive of all medical tests, treatements and medicines I ever received, I don’t have to bring them to each doctor I visit, I don’t have to go to the laboratories to receive the results of tests I underwent, they appear on the screen, at my doctor’s.
I changed some three GPs in the last years, and visited a considerable munber of experts, I didn’t have to carry my records to them each time. It’s very convenient !
I’ll tell you more. I don’t care about my medical records being known to all. I should maybe guard my private information more strictly, but it really doesn’t bother me at all that my medical records might be known to unauthorized people. If they’re interested in all my headaches, backpains and warts – well, if they have nothing better to do in their lives, let them study my records. It doesn’t bother me at all…
I know some people might be more reserved, and more interested in guarding their privacy than I am. I can understand such a position. But it seems you, people, cannot understand my position – cannot even think that such a centralized computer medical records system might be useful and good and efficient in passing and safekeeping important information.
Of course, people should be free to keep their medical records in the manner that suits them best, i.e. there should be an option to stay out of the central data-base. But, when all is said, I think such a data-base is very useful and convenient, and there is no need to urge people to stay out, or to try to prevent it.
Jacob, I would feel much the same as you except that I have no delusions about the additional things that private medical records could be used for.
The current British government are a rotten stinking lying deal-breaking bunch of statists who will stop at nothing to engineer a nightmare society of petty regulations and big nannyism. It would all be done ‘for our own good’ but every little state funded paper pusher would end up having an input into every decision in our lives with penalties for those of us who enjoy a cigar, a glass of whisky and a bacon buttie.
If it were all kept private by a commercially run organisation I could see the advantage of a central electronic record but we simply cannot trust these bastards.
An important issue, but an unimpressive website. The letter they ask you to send says that you understand the consequences of opting out – but nowhere on their campaign website do they say what those consequences are. They also keep banging on about some sinister ‘private company’ in Warwick, without actually saying who they are and what they are doing. I notice they don’t seem so concerned about the sinister ‘private company’ called BT that transmits all this data through its cables and routers anyway.
There are good arguments for creating a central care record database, and there are good arguments for not doing it the way it is currently being done, but this website doesn’t seem to list any of them. It provides no supporting evidence for its various claims.
I think NO2ID have a large and valuable job to do with stopping ID cards. They should let others worry about the national care record system.
I agree wholeheartedly with J’s comment, except for the last line.
By getting people to understand the database state that is growing up all around them, the real dangers of its capstone – the ID nationalisation scheme – can be brought home to people. NO2ID has always had the mission: “stop ID cards and the database state” because actually ID cards are the McGuffin, with little inherent significance but around which the whole plot of the National Identity Register/Citizen Information Project revolves.
Those horrors are quite abstract. Even the Children Act Index has made very little impact on the public imagination. But most people can see that having their track record of sex, drugs, and rock and roll readily accessible to every official of a large government department, the police and the security services, over their entire lifetime is not a good thing. It gets over the key argument from complacency for total[itarian] computerised governance bleated by the unimaginative: “nothing to hide, nothing to fear”.
Part of the problem is that many of the people who do recognise the dangers are very poor at communicating with the general public. This is bad enough within NO2ID, where presumption of too much knowledge is endemic, but in sister campaigns – such as the clumsily named Big Opt Out (spam-filters ahoy!) – it is worse.
They do exist, but the advantages of a national care records system are surprisingly small. Most punters imagine it as being good for emergency medicine – where it is most likely, in fact, to be irrelevant.
My medical records have never moved successfully between GPs. They have been lost every time. It might have been nice to have saved the time and patchiness resulting, but since the clinical intervention in the only significant or long-lasting problem I have had has been actually worse than useless, despite lots of different approaches, I’m inclined to skepticism anout the value.
However, there are good ways of doing it and bad, in principle, and UKgov has reliably chosen the worst. (Cf. the ID scheme.) What Jacob describes (whether or not he cares) is a good model – at least superficially it appears to be. If what was proposed in the UK was a decentralised encrypted system with the patient holding the key and controlling access, then I’d probably be supporting it, rather than opposing it – and so would doctors.
But giving privacy (and the power that confers) to the doctor-patient relationship is not what the DoH is about. Quite the reverse. It is not for our convenience; it is for theirs.
Might it be significant that Jacob is male? Female records will presumably record pregnancies and abortions: The Sun would be happy with that, I dare say.
I’m happy with my medical records being freely accessible to all relevant NHS personnel. But who is relevant and can I trust them?
Going back to the original post, 13% of doctors are apparently happy to upload data without consent. My GP’s surgery is staffed by 3 doctors. Given that 13%, I think there’s a reasonable chance that at least one of these medics is prepared to upload my data without letting me know about it.
I’m reasonably healthy. But there are a couple of things in my overall medical records I’m not especially happy about folk seeing. Why? Doctors make assumptions on the small pieces of information they have to assimilate very quickly. Frequently those assumptions aren’t very flattering. A few years ago I suffered from continual back-pain. Drugs, physiotherapy and specialists all failed to help. All tests showed there was nothing fundamentally wrong with me (this is not uncommon with back pain) which was cold comfort to say the least. At one point I was told categorically that I didn’t have cancer, which was odd because I never even suspected I did. Perhaps doctors gain some sort of professional pride, if they can’t tell you what’s wrong, by telling you what definitely isn’t wrong. God knows. I suspect at some point that some medic recorded that I was a malingerer. I don’t know that, but it wouldn’t surprise me. I wasn’t malingering. I was badly treated for 18 months then a physiotherapist in Leeds sorted me out.
I remain pain-free seven years later and I have to thank a Yorkshire lad called Dickon Crawshaw for that. I do wonder what all the assorted medics that failed to treat me recorded in their notes though?
I’m not against centralised medical databases, but the patient should have “ownership” of the records. I feel that very strongly, especially after I fell down the stairs and bust both scaphoids and was treated like utter scum at the MRI A&E. They just assumed I was pissed (which I wasn’t) and when it emerged that the injury happened the day before… Well, I was treated as true underclass. I was knocked out by the fall. I apparently refused an ambulance at the time (I wasn’t all there). When I eventually came around it was the next day and I was in a stunning amount of pain and it took over an hour to figure out how to use the phone with two broken wrists. No wonder I turned up at the hospital 12 hours after the injury. So, undoubtedly, I have “pissed, fell over” on my medical records except they never saw quite how vertiginous those stairs really are… The follow-up care and the consultant were very good mind.
I watched a Channel 4 programme on Wednesday evening with Henry Porter, and it was superb. He got a guy to demonstrate how easy it is to forge an ID card, as well as demonstrate that the Big Brother State is unlikely to succeed in curbing threats to security anyway. The good thing about Porter is that he is neither a foam-flecked leftwinger or rightwing buffer who hates Blair, but simply a very powerful, well-informed journalist doing his job. If only there were more like him.
Very much so. As the state insiduously creeps further into our lives I shall occasionally look back at Mr Porter’s exhange of correspondence with Number 10 Downing Street with distant fondness.
Quite honestly I am always amazed at how well Rifkind has developed since his comeback following the 2005 election. From the somewhat timid approach he conveyed as both Defence and Foreign Secretaries under John Major he does seem to have developed some steel in opposition. No eSure mouse he any longer.
The Gestapo ran Europe on a manual card index system. Just imagine the results if they had had a modern database ……
Not that I’m comparing our political “Masters” to the Gestapo, you understand but if it looks like a duck, quacks like a duck and walks like a duck, then it would be???
The Gestapo ran Europe on a manual card index system.
Well, for some purposes they had Hollerith punch-card analysis. But for surveillance of individuals, a network of informers, some highly-trained watchers and paper registries run by skilled clerks was the preferred method for secret police everywhere until surprisingly recently.