We’re super-excited to say that our discussion kits are available to download today. The discussion kits are the key to the Who Sees What? consultation process – they’re a neat little box that contains everything you need to hold your own discussion on electronic patient records and feed back to the outcomes.

And if you want to know more about what that discussion might look like, you can check out the Who Sees What video that’s also released today:

Who Sees What – discussion game from Stephen Whitehead on Vimeo.

If that’s whetted your appetite for taking part, you can get a free copy of the game by downloading it from our Get Involved page or by ordering a free hard copy by emailing stephen.whitehead@neweconomics.org. Drop us a line if you’ve got any questions about the project or the game – we’re here to help!

It’s a little reassuring to hear we’re not the only ones who are struggling to get going with electronic patient records. The Canadians aren’t finding it easy either.

But the causes of their problems are slightly different. The Canadian government has set up a non-for-profit organization called Infoway to ensure the introduction of electronic patient records. But because most policy is governed by individual Canadian provinces, Infoway can’t make them do anything. All they can do is point out the benefits and hope people jump on board.

But 8 years and C$ 2 billion later, only 17% have taken up the offer. That’s far off their 50% aim by 2010.

It doesn’t help that Infoway are only offering part funding for the program, so that individual practices still need to fork out to make the changes. And many are unsure why they should. The software is expensive, and the disruption while it’s being set up is considerable. Moreover, as Moshe Pinhas, president of a Toronto-based clinical software provider explains,

While [electronic records] provide benefits to doctors, the majority of the benefits of using [electronic records] flows to the system and not to the individual physician who is required to purchase and use them.

Many of the benefits are in communication between providers, long-term planning and research. Doctors are immediately more interested in providing better care in a shorter amount of time, and they’re not sure that electronic patient records will deliver this. Even if doctors do see long-term benefits, it doesn’t make sense to change to an electronic system until other service providers are also using them – and most consultants and hospitals are still sending things on paper. While it might be in everyone’s interests to move towards compatible electronic patient records, it’s in no-one’s interests to be the first.

Some might take doctors’ reluctance to make the shift as evidence that electronic patient records are impractical and undesirable. But their reluctance doesn’t seem to stem from reasoned objections as much as lack of time and money, and a chicken and egg problem which results in a strange kind of collective irrationality. While there has been much debate about the downsides of our highly centralized system, it could be argued that the NHS is at least in a position to take a larger and longer view of the common good.

Here’s a fun game for these rainy afternoons. Go to google and search for ‘NHS patient records lost.’

The results are impressive – the list of scandals gives the impression of data loss of an almost serial nature. A couple of thousand patient records lost on a stolen laptop here, another 2,500 left on a laptop next to a skip there. One of the more embarrassing stories is from NHS Central Lancashire where the medical details of 6,360 prisoners were left on a memory stick. The information was encrypted but the password was stuck to it on a post-it. In another, an unencrypted memory stick was left in the back of a car and only rediscovered when it was handed back by a carwash attendant.

The lessons are pretty clear. Memory sticks are a very common theme, so let’s stop carrying patient information around on them. Stolen laptops are another. So let’s leave patient information on their official record, and only access it through the proper channels. The point is that the electronic systems aren’t usually to blame. It’s the people using (or misusing) them which cause the problems.

Of course, googling is hardly a rigorous research method, and gives an exaggerated impression of the problem. ‘NHS staff don’t lose any patient records’ is never on the front page because it’s not a story anyone’s interested in reading. As more patient records are computerised and as databases get larger and more centralised, the potential for security risks also increases. That’s why there have been no less than 14 NHS organisations given formal warnings in the six months between October 2008 and April 2009.

Patient confidentiality has always been part of medical training, but never before have NHS staff had access to so much data. It’s never been this easy for things to go this wrong. And they’re set to become even more powerful as the programme continues. Confidence in the staff that know so much about us is essential if we are going to reep the benefits of electronic patient records. As well as increasing training, now may be a good time to take a closer look at how we hold staff accountable.

The Information Commissioner’s Office (ICO) handles all breaches of the Data Protection Act. When something goes wrong an NHS body is ‘rapped’ – made to sign an undertaking to improve security which could lead to legal action if broken. Given that the Data Protection Act is legally binding anyway, this is little more than a formalised telling-off. And there has been no sign of such legal action. The ICO is supposed to be getting new powers sometime soon, which will allow them to fine organisations for ‘deliberative or reckless’ breaches of data protection. But so far there seems to be rather few repercussions to losing thousands of patients’ sensitive health information – apart from some bad publicity and sore knuckles.

As the project really begins to kick off here at Who Sees What? we are proud to report that our events page was recently christened by two drop-in events in Manchester. Rather than using our ‘Democs’ game, our lovely colleagues at Pathways will be using some mini ‘argument maps’ to stimulate thought and discussion. You can pop in for ten minutes or stay chatting for an hour.

On 23^rd to the 26^th September they’ll be in Chorlton Library, Manchester Rd, Chorlton cum Hardy.

And even more excitingly, from  28^th October to the 1^st November they’ll be at the Museum of Science and Industry, in Manchester as part of Manchester Science Festival. The festival is a great place to get more involved in science, with hands-on activities, walks, debates, comedy and the chance to discuss the future of science with those in the know. Our stand will be in the the Bio Medical Exhibition.

So, if you want to find out more about electronic patient records, or just fancy a chat why not drop in to one of these events and look for the Who Sees What? stand.

Also, if you’re running an event of your own and would like to invite people in your local area, why not drop us a line at nefguest1@neweconomics.org so we can add your event to our list.

A recent report by the Audit Commission has drawn attention to the standards of information on existing patient records.

In order to check the performance and finance of Primary Care Trusts, the Audit Commission does an annual check that the trusts’ bills match up with the patients’ original medical records. However, in an average of 8.1% of checks, the information on the original record was missing, illegible, incomplete or otherwise unusable.

During the debate on electronic patient records, the assumption has been that the information is out there in doctor’s surgeries and in hospital files, and that the new NHS IT programme is about changing the way we store this information for maximum benefit. However, for the potential benefits to be realized, it may be that as much attention is needed to the humans which update the files, as the computers which store them.

The move to electronic patient records has rightly heralded a number of calls for more training for NHS staff in the need for confidentiality. But much less has been said on improving accuracy and diligence in the recording of information in the first place. It wasn’t until October 2008 (6 years after the NHS IT programme began) that national standards were set on the structure and content of what should be recorded on a patient – and they have not yet been widely adopted.

Needless to say, there is a need for accurate patient records whether they are electronic or not. But the way we are using patient records is changing. Soon, when a doctor writes (or fails to write) an update on a patient’s record, it it not just her colleagues that are misled. Immediately it is added to a regional or national database, and may be accessed and acted upon in an emergency situation, or relied upon for research – the implications of mistakes and emissions are potentially much larger.

There is hope that typing will get over the problem of illegible handwriting, and clever computer programmes may be able to recognise and highlight inaccuracies. But the shift from paper to computer cannot help with missing or unusable information. In all, electronic patient records increase, not decrease the need for accuracy and diligence in record-keeping on the part of doctors and NHS staff.

While principally interested in the financial implications of these problems, the Audit Commission offers us a vital reminder of the GIGO principal of databases: no matter how good your system, if you’ve got Garbage data going In, you’ll have Garbage data coming Out.

The Tories have long been grumbling about the NHS IT project being over-centalised, over-budget, behind schedule and a waste of tax-payers’ money. Now, after a full report, they have pledged to dismantle the NHS IT system so far and cancel the contracts with current providers. E-health insider rightly points out this may be a false economy given the amount already spent by the Department of Health and the cost of cancelling such massive contracts. But money is only one of the Tories’ incentives. They also call for the system to be more ‘patient-centred’ (a hard one to argue against) and more localised.

Note that the tories aren’t arguing against electronic patient records per se. They’re arguing about how and where they should be held. To understand the Tories’ proposals requires getting to grips with the nitty gritty of the NHS IT plan.

The Tories’ main victim would be the National Data Spine. The Spine is the central connector between different aspects of the NHS IT system. The Spine hosts GP2GP, which transfers a patients’ information when they move GP surgery, Choose and Book, which books appointments electronically, and an electronic prescription service. The Spine also holds Summary Care Records, which contain patients’ basic information such as allergies, blood type and operational history. The Tories pledge to scrap all this.

The Tories’ second proposed fatalities are Local Service Providers which are working at delivering IT infrastructure to hospitals and Primary Care Trusts across a region. The Tories pledge instead to let local health providers choose their own IT services ‘off the shelf’. Although services would be electronically compatible, detailed patient data would only be shared when necessary, and would be held on a much more local level.

Finally, the Tories repeated their determination to replace HealthSpace, which allows patients to access their records online, with services run by private companies like Google or Microsoft.

While it might not save as much money as the Tories claim, the scrapping of the Spine and the introduction of more local databases does address many privacy concerns (although handing HealthSpace over to private companies raises many more). But the Tories also give up a number of potential benefits.

Dismantling Summary Care Records would mean that doctors wouldn’t have access to information on a patient if there was an emergency outside their local area. If Dave from Newcastle is hit by a car while on holiday in Manchester doctors wouldn’t have access to crucial information such as  blood type or allergies. This instant access was seen as one of the main benefits of electronic patient records, and a major contribution to patient safety.

The Tories have also been very quiet about access to patient data for research. The NHS intends to create a database for approved researchers, and information would be uploaded from the Spine and more detailed regional detabases. Without these, we may be losing out on crucial research opportunities.

Some research by Carnegie Mellon University on our attitudes to privacy could lead to some interesting conclusions for Who Sees What?

You might be forgiven for assuming that when companies reassure you about their privacy policy it is, well, reassuring. Not so, says Carnegie Mellon University. A series of clever tests have shown that we have just the opposite reaction. In one experiment,

Subjects completed an online survey where they were asked a series of personal questions, such as “Have you ever tried cocaine?” Half of the subjects completed a frivolous-looking survey – How BAD are U?? – with a picture of a cute devil. The other half completed the same survey with the title “Carnegie Mellon University Survey of Ethical Standards” complete with a university seal and official privacy assurances. The results showed that people who were reminded about privacy were less likely to reveal personal information than those who were not.

So, if a company or organisation says it takes your privacy seriously, this has the effect of adding legitimacy to these concerns and making you less likely to give out information. Social networking sites seem to have clocked onto this. Their aim is to get people to disclose as much personal information as possible, so their privacy settings are confusing and low profile. Their message is that privacy doesn’t really matter – and it works.

This raises an interesting question for us here at Who Sees What? Our aim is open-minded, informed debate about how the NHS should balance privacy alongside ease, practicality and research. But just by asking people to think about privacy and security, are we inevitably making people more concerned about their medical information than they would be otherwise?

The NHS may find itself in a similar catch 22. There is broad consensus that the NHS should do its best to inform patients about what is happening to their records and who can see them. But if they want to avoid privacy concerns, should they follow facebook’s example by keeping as quiet as possible about the use of medical records, and make them confusing to understand? At least some would find this conclusion hard to stomach.

True to his name, the blogger The Yorkshire Ranter has launched a fierce (and in places rather convincing) attack on  Tory plans to hand over the NHS IT plans to Google or Microsoft. His cynicism stems from the rather philosophical point that ‘the purpose of a system is what it does.’

Unlike the NHS, nobody pretends that the purpose (and by this he means real intention, rather than official stated purpose) of Google or Microsoft was ever the good health of the British nation. His argument is, therefore, that their systems won’t be designed to work towards this end, whatever they say. Google’s prime aim is to sell advertising, a point which we flagged up here at Who Sees What? when the Tories first made their proposal.

But The Yorkshire Ranter argues that targeting patients for advertising is only one possible side-effect of commercial ulterior motives.

MS products have been triumphantly successful in a couple of things – inducing people to buy ever more aftermarket security products from other American proprietary software companies, scaring them off going to the competition by making all their file formats very slightly incompatible with everything else including other versions of their own products, and generally maintaining the public belief that computers are terribly mysterious and frightening and that they must expect the experience of using them to be painful and unpleasant. This belief is very useful if you want to sell products on “user friendliness” (i.e. pretty graphics) or if you want to sell things to them in general.

Given that medicine itself is mysterious and frightening to many, this could be a disastrous combination.

Even if we did trust their intentions, though, this blogger argues that neither Google nor Microsoft possess the technical complexity necessary for such a mammoth task as the NHS database. The US models of GoogleHealth and Microsoft Health Vault are simply tools allowing patients to view their records. This is similar to the NHS’ (recently shelved) HealthSpace. But that was only one part of the NHS’ massive IT plans, which included many more services such as a national ‘Spine’ of basic information, access by researchers and a choose and book system. These potential benefits just aren’t catered for by Microsoft or Google’s model.

The Tories’ proposed ‘replacement,’ to the current NHS project, then, is no replacement at all, but equates to scrapping the whole show. Which, of course, may be just what they want to do.

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.

In June we mentioned that the NHS was halting developments to HealthSpace after a low take-up of patients choosing to log on in pilot areas. The NHS promised further investigation into the value of HealthSpace to patients before reviewing where to go from here.

Well, that research is now being carried out and you can fill out this 5-minute online survey on what services you would find most useful. The results may be crucial to whether the NHS IT project will do anything to increase patients’ control over their own care.