And expect those results to look very different to the ones below: in the end, nearly twice as many people voted on paper as online.

We’re reaching the end of our public debate on electronic patient records in the NHS and we’d like you to contribute to an online vote which helps us think about what why the people who took part made the recommendations that they did. We’ve come up with five possible ‘guiding principles’ for Electronic Patient Records in the NHS and we’d like you to rate the options in order of preference from 1 (favourite) to 5 (least favourite). Please use all the numbers from 1 to 5 and use each number only once. The options are:

Privacy and Choice: Protecting patient privacy is the most important thing. Individual patients must be allowed to decide about how their records are stored and protected.

Privacy and control: Protecting patient privacy is the most important thing but the NHS can be trusted to take decisions with that in mind. Patients don’t have the time or the information to make these choices.

Benefits  and choice: The benefits of electronic patient records are so important that it is worth creating some privacy risks, but it should be up to the individual patient to decide.

Benefits and control: Electronic patient records are so important that it is worth creating some privacy risks. The NHS can be trusted to decide what risks are acceptable.

No development: Electronic patient records will always create unacceptable risks to privacy. The NHS should not pursue this technology.

Before voting you need to create an account which takes about two minutes. Just click that link and then enter a username (which can be anything you like) and your email address, and a password will be emailed right to you. Registration is just to stop people voting more than once: we’ve got no way of telling what you’re voting for and we promise not to send you any spam!

If you’d rather vote offline, you can download a voting form to print out and send back or send an email with your address to stephen.whitehead@neweconomics.org and we’ll send you a paper voting form.

The fate of the SCR must be now very much in doubt, as the LibDems and the Tories seem likely to cancel if they win the election while, even under the current government the NHS IT programme has been scaled back.

The row centres on the way the roll-out has been handled. Groups likes the British Medical Association which have previously given a cautious welcome to the programme, argue that opting out of the system is unacceptably difficult. They want patients to be sent an opt-out form together with the letter telling them that they are to be entered in to the database.

The trouble begain earlier this month when the British Medical Association called for a suspension of the process of adding records to the service and escalated when the Patients’ Associationand civil rights campaigners Liberty  backed the call.

The NHS responded by suggesting that including opt-out forms with the letters would confuse patients, causing them to opt out in error. However, the controversy was fuelled when some patients were sent the wrong details owing to a mistake by a private contractor.

Despite all the bluster, though, there’s little that the BMA or anyone else can do the prevent the rollout from going ahead. The only thing that’s really likely to stop the project is the election. A conservative victory would almost certainly see the a fundamental rethink of the NHS’s IT strategy which is likely to meet the expectations of the commentators who are calling for a locally based system rather than the current national scheme.

It seems then, that rather than arguing over the scheme’s merits, the critics of NPfIT, and it’s defenders, should be thinking about how they cast their votes.

“The creation of centralised systems that make sensitive personal information accessible to many, and not just those directly involved in providing care, undermines the confidence patients can have – must have – if they are to disclose things about themselves for their own treatment and well-being, and for the wider public health.

The myth is that the patient is at the heart of these systems; that they are for our convenience or safety, or purely administrative and not to serve Whitehall’s explicit goal to ‘overcome current barriers to information sharing’ or the interests of a powerful medical research lobby.

In reality the vast majority of patients are highly motivated to look out for their own data and, being the person most likely to be affected, are the smart choice if you’re trying to ‘join systems up’ – especially in the sorts of critical situations being used to sell the Summary Care Record.”

If the Jury’s still out on the Summary Care Record, then what Booth’s piece is very much the case for the prosecution. NO2ID have been some of the most vocal opponents of centralised databases across government, and their attitude to SCRs is no different. But, while you should definitely take this with a pinch of salt, it’s definitely worth reading the whole thing – if just to get a different perspective.

Reassuringly, though, an announcement this week suggests that it will soon be much easier for patients to get mistakes fixed. New guidance from the Department of Health, prompted by comments from Patient Information watchdog the NIGB,  suggests that patients will now be able to request directly from their doctor, instead of having to go through a formal complaints procedure.  This is a big advance on the situation just a few years ago when a woman wrongly described as an alcholic had to have a specific act of parliament to have the information stricken from her record.

At the moment, only a tiny number of people request changes to their record. However, as more and more patients are able to view their records we are much more likely to spot errors and want them changed. Having a straightforward system for correcting errors is therefore vital.

Last year saw shockingly disparate reports on the National Programme for IT (NPfIT). Some declared that the programme had been slashed, after chancellor Alistair Darling’s budget cut announcement in December. Others hailed 2009 as great year for the programme, as the Care Record Service (CRS) was finally rolled out in a few sites – after years of delay – and usage of the already-established Choose & Book and picture archiving and communication system (Pacs) continued to increase.

…2009 did not see any major changes to NPfIT. Several elements of the programme, such as Pacs, radiology information systems (Ris), the N3 broadband network, Choose & Book and the NHSmail email system, had been rolled out in the years before, while CRS progress was very modest.

But there is much suspense over what will happen next.

Read the rest at Smarthealthcare.com

The report found that just over half the general public (53%) and a slightly smaller percentage of patients (46%) thought that identifiable data should never be used for research purposes without consent while only about one in ten researchers (11%) thought this.

There’s something about survey results that makes it seem as though opinions are just ‘out there’ in people’s minds, ready to be found out. This is surely even less the case with Electronic Patient Records than with topics like attitude to immigration or Labour vs. Conservative. Most people don’t even know what an Electronic Patient Record is, let alone have any idea what they think about them or how they should work.

The Department of Health clearly recognized this, and went to great lengths to provide information for their survey respondents. The survey includes 23 questions, but the word count is an impressive 6,000, most of which is providing background information to each question, told through the story of their imaginary patient Pam.

I sympathise with the Department of Health. It’s not easy to get peoples’ informed opinions. But neither is it easy to take in 6,000 words of information about a new topic, even if you have the time (or inclination) to read it. Which is why (and you may have seen this coming if you’ve already been to our Get Involved page) we’ve designed our Democs discussion game, in which very short gobbets of information are presented on information cards which are shared and discussed.

And factual information isn’t the only thing people need. Even more importantly I’d want to know the issues involved for different people. Pam (the Department of Health’s imaginary patient) has diabetes and her use of medical records will of course be influenced by that. But what about someone with very private sexual health information on their record? Or someone who has a rare disease which desperately needs other peoples’ records in order to find a cure? In order to give my opinion on how the system should work for everyone, I need to a chance to think about the perspectives of other people. And it’s hard to do this by yourself.

Let’s go back to the Department of Health’s results for a moment. Over half of patients want to be asked before their identifiable records are used, while only 11% of researchers think they should be. With more discussion and more opportunity to examine different perspectives, it will be interesting to see whether the results of our Who Sees What? project will differ.

The Department of Health has reacted to the feedback they’ve gathered. Recognising the value patients put on consent, they’re just launching a series of pilots on how best to manage the consent system. This suggests that people’s input can change things. So it’s never been more important to get that process right.

Photo by Andrea Bandelli

Our Democs discussion game which launched in October has already got people across the country talking about Electronic Patient Records. It’s been played by groups as diverse as an NHS Local Involvement Network in North East Lincolnshire, a Citizen’s Advice Bureau in South Devon and medical students at Queen Mary University.

According to Patsy Riggs of an Ataxia support group in Ipswich, “the game was great fun and certainly simulated conversation.” It’s been played in village halls and on lunch breaks at work, and we’ve just been told by one group that it was a welcome distraction on a 6 hour train journey!

Results are already pouring in, but this is really just the beginning. You’ve still got plenty of time to get involved and contribute your views to the debate. And in case time is a limiting factor we’ve written some instructions for a half hour version of the game.

If you want to find out more or order a game just get in touch on 020 7820 6384 0r email stephen.whitehead@neweconomics.org.

On the BBC Health website Dr Graham Easton’s blog gives us a GP’s view the use of electronic patient records in doctors surgeries.

He is a staunch supporter, and provides us a useful reminder of the inadequacies of the previous system which relied on ‘a pile of little brown cardboard packets on my desk – ‘Lloyd George’ notes – stuffed with folded letters, test results and illegible hieroglyphics. Some patients needed three or more packets stuck together with sellotape.’

As well as the usual benefits of electronic records (the speed of finding records, the legibility of writing) Easton describes the way that his computer checks up on him. It can remind him of the possible side-effects of a drug, check it’s compatible with the patient’s other medication or send reminders when a patient is due for tests.

Interestingly, he also highlights the use of patients’ records for auditing within the surgery.

Unlike with paper records, it’s very easy for us to check and audit our performance to find out how we’re measuring up against national standards. For example, how many of our patients with high blood pressure have their pressure adequately controlled?… At the moment I’m finding out how our practice is doing when it comes to treating fungal toenail infections – a common problem with clear evidence-based guidance on how to test for and treat it. The computer found all the relevant cases in the blink of an eye (it would have taken days of searching before).

There’s been a lot of attention to the national Secondary Uses Services database, which makes patients’ (anonymous) records available for purposes not directly related to patients’ care, such as auditing and research. However, GPs seems to be doing this kind of thing on a much smaller scale, with arguably many fewer risks to patient privacy.

Even as a self-proclaimed supporter of computerised medical records, Easton is fully aware of the downsides. Many of these are problems with computers in general. They break. And as well as saving time overall, we’ve all had computers waste our time as well, which is particularly infuriating in GPs surgeries where time can be so tight. The question of patient security and privacy also looms large.

But Dr Easton is worried that computers can have a more profound effect on the relationship between doctor and patient.  Doctors with ‘one – or both – eyes on the computer screen’ can miss subtle bits of information and give the impression they’re not listening. The computer may work well to keep doctors in touch with the system – by sharing notes, comparing performance or dispensing advice – but it seems they can also act as a barrier between the doctor and the patient.