Electronic patient records: reasons to be cheerfulBMJ 2008; 336 doi: https://doi.org/10.1136/bmj.39484.423391.59 (Published 14 February 2008) Cite this as: BMJ 2008;336:390
Like many people, I use the internet for banking, email, shopping, and the transfer of sensitive personal documents, including tax returns. I take sensible precautions—such as declining to give my bank details to phishing fraudsters—and I trust it.
Likewise, I’m relaxed about the prospect of my medical records being available digitally throughout the National Health Service. In fact, as the NHS Summary Care Record pilot scheme approaches its first birthday and enters its evaluation phase, in anticipation of national roll-out, I’m positively excited.
I find it reassuring to think that should I ever find myself in an emergency department, the complete strangers fighting to save my life will have access to any vital personal information that could govern how they treat me.
Also, I find it inspiring to think that the information harvested each year from millions of such encounters will be aggregated and analysed to ensure that the NHS is being managed as safely and as efficiently as possible for the benefit of all.
Helen Wilkinson, a former general practice manager from Hampshire, does not share my equanimity. A few years ago, when she first got a whiff of NHS plans to centralise patient records, she took a look at her own file and discovered that a surgical procedure she had had in 1998 had been wrongly coded into her record as treatment for alcoholism.
“I went ballistic,” she told the Guardian. “To be labelled an alcoholic—who had seen it? Who knows, literally hundreds could have seen it” (www.guardian.co.uk, 2 Nov 2006, “The woman falsely labelled alcoholic by the NHS”).
The “computer error,” as the Guardian put it (although strictly it was really more of a typing error), drove Ms Wilkinson to embark on a successful battle to have all her records expunged from the NHS and to set up NHS Confidentiality, a campaign “to provide a focus for patient led opposition to the government’s NHS care records system.”
Now, she says, she refuses to accept treatment by the NHS on the ground that to do so automatically means that her details will be recorded. “I am not going back on a database if it kills me,” she said.
Let’s hope it doesn’t come to that. I’m not sure that the Freedom of Information Act deserves a martyr.
Personally, I’m with Gillian Braunold, GP and clinical director of the Summary Care Record and NHS HealthSpace, an online personal health organiser. She thinks that “information is as important as antibiotics for this generation,” but Ms Wilkinson isn’t alone in her principled refusal to play her part in an information revolution that would seem to promise benefits for every user of the NHS.
A recent survey of GPs carried out for the Times by Doctors.net found that four fifths of 640 respondents were concerned that centralised electronic records system would not be secure, and the BMA’s 2007 annual representative meeting resolved that members should not cooperate “due to concerns about security and confidentiality.”
Some have gone even further. The five GPs at the Oaklands practice in Yateley, Hampshire, for instance, are urging their patients on their website to “opt out of the NHS database without delay” (www.ymcentre.freeserve.co.uk).
Why? Well, the gist of it seems to be that the government can’t be trusted not to lose stuff, which to a certain extent is fair comment. But does it really reinforce the refusenik case to suggest that “the unbelievable data protection breaches that were realised towards the end of 2007, including the loss of 25 million child benefit records and 15 000 pension policy records by Revenue and Customs . . . illustrate the very real dangers of choosing to upload personal data to huge centralised government databases?”
No, it doesn’t, because of course these examples show no such thing. In fact, they are a good argument for the NHS Spine.
Moving sensitive data around in physical form is asking for trouble—cue endless stories about benefit disks lost in the post, security services laptops stolen from cars, and paper NHS patient records scattered off the backs of dustcarts. Transferring information through a secure digital network is always going to be a much safer bet.
Part of the problem, undoubtedly, is an easily exploited fear of information technology combined with a wearyingly persistent tendency for Orwellian alarmism at the mere mention of computers.
But let’s face it. Big Brother will not be watching you. He probably has better things to do than snigger about your piles.
Nevertheless, according to the Daily Mail,Ms Wilkinson’s much publicised website, The Big Opt Out (www.nhsconfidentiality.org), has now been visited by 200 000 people who have downloaded a pro forma opt-out letter designed to be sent by patients to their GPs. Given Ms Wilkinson’s experience with coding errors, there is something touchingly trusting about the letter’s demand that the GP “record my dissent by entering the ‘read code 93C3—Refused consent for upload to national shared electronic record.’” Those familiar with such things won’t need me to spell out what is indicated by the neighbouring code 93C2.
Presumably the 200 000, like Ms Wilkinson, think that they have an absolute right, bought and paid for by their taxes, to have no part of their medical records, however anonymised, available to anyone other than the doctor who is treating them.
But do they really have such a right? What about responsibilities and that unfashionable concept “the greater good?” Of course, patient confidentiality must be taken seriously, but surely it has to be balanced sensibly with the obvious advantages of sharing information.
Fortunately, and despite media predictions of doom, there are signs that most people will embrace electronic patient records pragmatically and won’t be opting to carry their medical records with them everywhere in a brown paper bag on principle.
So far, the trials have seen more than 150 000 summary care records loaded on to the Spine, with opt-out rates running at less than 1%—even in Bolton, where some GPs have been actively campaigning against the system.
Will there be cock-ups? Of course there will. Will the sky fall in? Of course it won’t.
In the short term, a vociferous minority will slow progress and continue to grab the headlines, but information governance systems will evolve to meet the new challenges, and, before we know it, we’ll be looking back and wondering what all the fuss was about.
Remember the “millennium bug?” Quite.