Big news for electronic patient records this week. Doctors’ representative body, The British Medical Association has called for uploads to the Summary Care Records service to be halted. Smarthealthcare has the story:

The British Medical Association has written to health minister Mike O’Brien, expressing ’serious concern’ about the widespread introduction of Summary Care Records

The BMA also repeated its recent call for opt-out forms to be included with the information being sent to patients, and demanded that comments made by the BMA be withdrawn from a promotional video made by NHS Connecting for Health.

[...]

The Department of Health denied that the introduction of SCRs was being rushed, as it has taken place over five years. “All patients in England over the age of 16 who are registered with a GP will be written to personally about the introduction of Summary Care Records. We absolutely support the right of any patient to opt out of having a record and have provided various options to make this process straightforward,” said a spokesperson.

The roll-out process for Summary Care Records has long been a target of criticism from privacy and patient rights campaigners. But the BMA throwing it’s weight behind the criticism is a significant development. It’s clear from the government response that uploads are not likely to be halted any time soon. But this will add weight to calls for a complete re-design of the roll-out process. Read the whole story at Smarthealthcare.com.

This is a guest post from Sophia Hatfield of Pathways, a Manchester-based consultation and community engagement organisation.

I’ve been running Democs games across the North West with the Pathways Team and have consulted lots of different groups with very different reasons to take an interest the project. Most Patient Groups and Forums seem to have very mixed opinions about the future of Electronic Patient Records and it’s been interesting to see how a group with opposing views can come to a general consensus about what should happen. Some people argue that the benefits to research and care completely outweigh any risks related to security with regards to sharing records, others remain adamant that consent is essential before records are created and before any information is shared for research and management purposes.

Without exception, every group I have worked with so far has pointed out the huge benefits Electronic Patient Records could bring to emergency care. Whilst people living with long term conditions and having regular contact with the NHS are more likely to want to engage with research project and access their own records, other group members raise more concerns about the security of the system and the safety of their personal records.

As well as working with Patient Forums and support groups, I have also been running games with vulnerable groups such as Mental Health and Gay, Lesbian and Bisexual Support groups. Many people have asked questions about how the new system would affect confidential NHS services including GUM clinics and Mental Health support services. As it stands, a lot of people don’t want certain information to be included on their general medical record and if people felt there was a risk of information being leaked, they may be less likely to seek treatment for certain conditions.

Interestingly, the same words have come up repeatedly with many groups. Security, Access, Research and Consent seem to be the four main discussion topics, although they often mean different things within different groups. The  issue of how we handle medical information does not seem to have been widely discussed up until now. I wonder if many of the concerns people are voicing would be equally as prevalent within any system for recording medical data. Having spoken to so many people, I personally think it’s important to address these concerns now and get the new system right.

Over on Smarth Healtchare, Phil Booth, head of the NO2ID campaign against ID cards, has written a scorching attack on the Summary Care Record.

“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.

Liberal Democrat health spokesperson Norman Lamb laid out his party’s vision for the future of the NHS at a high profile policy speech earlier this month and had some interesting things to say about patient records systems.  Lamb’s vision is of an NHS that empowers individuals, with easy access to one’s health records and a simplified Choose and Book system.  Lamb claims that a decentralized system would hand power and budgets to hospitals and GPs, encouraging collaboration and cutting costs.

Lamb proposes radical changes to two of Labour’s key NHS IT projects: Choose and Book, and the National Care Records System (NCRS).  Choose and Book, he argues, should be a streamlined service which allows patients to book appointments online.  The NCRS, on the other hand on the chopping block, as he viewsa centralized database is unnecessary, and that connectivity between primary, secondary, and social care is more important.

His plans reflect the frustration felt by many with the NHS National Programme for IT, which is hugely expensive, behind schedule, and still rife with controversy over the implications for personal privacy and technical security.  In fact, many of Lamb’s proposals bear similarities to the Tories’ proposals to scrap the central database.  However, there are issues with this approach. While localized databases might eliminate some concerns about personal privacy, they wouldn’t necessarily reduce costs: the NHS has long-standing contracts with IT companies who would expect compensation for their work thus far if smaller, local IT companies stepped in to finish the job.

Nor do localized databases address the concerns for communication between primary, secondary, and social care.  It is still unclear how much access other medical personnel such as care workers and pharmacists would have, and whether they would be able to put that information into a database for a doctor to see later.  Furthermore, some would argue that abandoing the national Summary Care Records service – which contain basic patient information such as allergies, blood type, and operational history- means giving up a significant benefit to patients receiving out-of-hours or emergency care.

Lamb also suggests that patients should be able to consult with physicians via email or telephone, which is currently not permitted.  This proposal opens up an interesting discussion on modern communication.  Given some of the firewalls and high-security passwords that keep our email hidden from unwanted eyes, it could be argued that email is even more secure than the post.  To date, however, it is not illegal to open another person’s email from an account left open on a desktop, whereas it is illegal to tear into someone’s letter.  How can we ensure security for minors, who may be forced to give their internet passwords to their parents?  Would those without the internet effectively be marginalized, demoted as GPs address their bulging inboxes first?  Perhaps email consultation could happen on an “opt in” basis, where patients sign a form consenting to email communication and the potential conflicts involved.  Such a system could very well improve patient-physician communication and lower NHS costs, but it does open up a new set of risks to security.

Last week I was lucky enough to attend a Who Sees What discussion event run by an older people’s forum in the North West. One of the most interesting points to come out of the discussion was fears about the accuracy of records. One member of the group quite rightly suggested that if electronic records are shared between different surgeries and hospitals then the impact of a mistake on your record will be much greater.

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.

At Who Sees What this week we’re too busy helping people put on games to do much blogging, but I thought I’d steer you to this fantastic forecast for 2010 from the Smart Healthcare blog:

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

I don’t know what 2010 holds for you, but it promises to be a big year for electronic patient records. Tuesday saw David Cameron kicking of the pre-election campaign with a speech which, amongst other things, put online records access at the heart of Conservative NHS policy.

But while Cameron’s announcement that patients will “be able to check your health records online in the same way you do your bank account” is very appealing, there was less detail about how this would be implemented. At present, no one GPs’ surgery or hospital has all the information about every patient so an online access system will need to be able pull together data from multiple places into a single coherent display for the patient – no easy task. And much historical data is still locked away in paper files so, if complete records are to be made available, the huge NHS programme of transferring records to computer will need to carry on in earnest.

In fact, despite their reported hostility to the big NHS databases which have been a feature of Labour health IT policy, any online access system is going to rely heavily on the infrastructure that’s already been put in place, from the N3 national broadband network, to the Spine database which links different patient records systems. Even Cameron’s other announcement – that patients have access to detailed performance statistics for different GPs and hospitals, will rely heavily on patient data collected via the Secondary Uses Service database which has attracted a lot of criticism from privacy campaigners.

If the Tories do win the next election, it’ll be interesting to see how likely Health Secretary Andrew Lansley tackles these apparent contradictions – especially in an environment where money for new projects is extremely difficult to find.

Here’s to an interesting 2010, eh?

We’re super excited to be launching our new materials for people with learning disabilities which we have developed in partnerhip with a great organisation called Social Interface.

One of the core values of the project is that in order for policy to work, it needs input from everybody. When we made our Democs discussion game we tried to make the issues as clear and as engaging as possible. But since then the project has been picked up by so many different groups that we’re learning that one size doesn’t fit all. Our adapted version is aimed at people with learning disabilities but may also be a great alternative for other groups who need a simpler approach. The process is roughly the same, but we have written different cards and a short video to help the issues come to life.

If you or someone you work with would find these materials useful, just get in touch and we can send you a copy. The results will be fed back into the project as usual.

The Department of Health last year ran a consultation into who should have access to patients’ medical data. More precisely, they wanted to know about ‘additional uses’ of patient records, apart from the patients’ medical care, and about the different systems which should be in place for ‘anonymised’ and ‘identifiable’ records. They had public meetings and focus groups, but most of the results were through a written questionnaire. The consultation sadly confirmed how predictably polarized opinions are on the issue. As E-Health Insider reports:

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.

Yesterday, on the Andrew Marr show, Chancellor Alistair Darling announced the NHS IT project will be seeing serious cuts as part of a crack down on government spending. He argued that “the NHS has quite an expensive IT system that, frankly, is not essential for the front line. That’s something we do not need to go ahead with just now.”

At the moment, nothing concrete has been decided, but on Wednesday the Chancellor is expected to publish more details in his Pre-Budget Report.

The NHS IT project is certainly an easy target. The project is estimated to cost £12.7 billion pounds – a number that is so large, it’s basically impossible to comprehend. But as we mentioned earlier this year when the Tories suggested cutting the scheme, it’s not clear that this is the money-saving trick it appears to be. An estimated £400m of public money has already been spent on the project, and one of the contractors, Fujitsu, is apparently owed a further £800m in payments. Cancelling the project at this point might not create immediate savings.

And Darling’s proposals might be a false economy in a more general sense. In November, NESTA (the National Endowment for Science Technology and the Arts) came out with an interesting report on the future of healthcare in the UK. They recognised that the NHS needs to save 15-20 billion over the next few years, and that they need to do this in the context of an ageing population in which two fifths of adults say they live with a long-term health problem. Cuts won’t do it, they argue. Something big needs to change.

The NHS was originally designed to deal with short-term, infectious illness. The biggest challenges facing the NHS today, however are long-term, preventative diseases such as cancer, cardio-vascular disease and diabetes. In order to tackle these conditions, the NHS needs to adapt to focusing on behaviour change, prevention and self-management. And this, NESTA argues, can only be done by giving patients control and responsibility over their own health.

HealthSpace seemed an important first step in the right direction. By giving patients access to their records online, patients could monitor their own health conditions and be less reliant on constant visits to health professionals. HealthSpace is also an important step in the development of telehealth, which can decrease the amount of time spent in hospital beds – a significant cost to the NHS.

HealthSpace was one of the first casualties of the NHS IT project, and was shelved back in June. Yesterday’s announcement, however, suggests there’s even less hope of getting it back on track. It seems that Darling’s plans may be a case of short-term cuts at the expense of a more long-term sustainable decrease in NHS spending.