Labour has promised in its manifesto to “release savings by cutting red tape and directing resources to where they matter most.”  This translates to scaling down the NHS IT programme, a move which Labour claims will save hundreds of millions of pounds.

The Tories want to devolve control over the health budget to the “lowest possible level,” giving patients a role in managing their own health budget, and with that, management over their own health records.  They would cancel the government databases, and break up larger Information and Communication Technology (ICT) projects so that smaller suppliers could create ICT solutions in their local areas.

The Lib Dems are aiming to cut the size of the Department of Health in half.  To do that, they would, among other things, cut budgets to quangos, and even abolish Connecting for Health, the NHS organisation created in 2005 to deliver the NHS programme for IT.  Interestingly, although they want to eliminate Connecting for Health, they state that GPs should be accessible to patients by email.

All three parties have focused on the theme of patient control.  They’re responding to the perception that the NHS is too bureaucratic, and that power should be in the people’s hands instead.  And while all of their proposals are merit-worthy, they each come with their own problems.

For example, scaling down the NHS IT programme will not necessarily bring great savings.  The NHS is involved in a number of contracts that will be difficult to renegotiate, and many of them are based on results, so we do not yet know just how expensive they will be. 

Smaller, more local suppliers may be able to provide more bespoke solutions to local trusts, but they are not a perfect answer either.  Smaller firms may not be able to offer the best deals that come with orders on a national scale.  Moreover, unless clear rules are set out regarding how data should be stored and shared, individualized IT systems may be incompatible with each other, thus losing one of the original benefits of a national system.  And by cancelling the government databases, Conservatives imply that they are considering a deal with Google or Microsoft to provide record acess on behalf of the NHS, which raises a whole new set of questions about how far we trust private companies with our personal data.

Nor is abolishing Connecting for Health necessarily the best solution to address budget concerns.  Gayna Hart, managing director of Quicksilva, argues that one of Connecting for Health’s aims is to join up medical care with social care, providing better information to both sectors to improve the overall level of care.  She claims that eliminating this connection could mean that vulnerable people would slip through the cracks of the system, or that the elderly wouldn’t receive the most comprehensive care.

It’s certain that the healthcare debate will continue throughout the election campaign, and that the substantial pot of money allocated to NHS IT will present a tempting target for parties who are under perssure to spell out where they would make cuts.  What’s less certain is whether the new government will actually be able deliver its promised savings and benefits once in office.

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.

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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.

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.

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?

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.

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.

It’ll all kick off on Thursday, as the Princess Group Practice in Southwark will begin uploading information onto a Summary Care Records for every patient who has not opted out.

That last bit is key: every patient who has not opted out. In Southwark, as in the trial areas, patients are sent a letter 12 weeks before the creation of their record. It’s then left up to them to write in if they don’t want a record to be created. This form of implicit consent is a second best for many who want more control in the hands of patients.

But one thing has changed this time round. During the trials, once a record had been created, it could not be deleted. So if you were away for 12 weeks, or your address was wrong or your dog ate your letter and you missed the opt-out window, then tough luck. After changes in the rules in June, however, it became possible to delete a record after it’s been created – but only if it has never been used. We can see this in action now in Southwark. Patients who opt-out after Thursday will still have a record containing name and demographics, but the medical information can be removed. Interestingly, Southwark’s website does not go out of its way to make this detail clear, perhaps because they want as many patients to stick with the system as possible.

Despite London’s excitement at finally getting things off the ground, they’re still far behind Scotland where the ‘Emergency Care Summary,’ (which is roughly the same as England’s Summary Care Record) has been up and running for a while. Plans are even on the way to add an ‘end of life care,’ option where patients can give guidance on situations in which they would or would not like to be resuscitated. In Scotland, officials are congratulating themselves on a reassuringly low 0.02% drop out rate. But this is only reassuring if 99.8 per cent who do have a record know that they have one and understand how the system works.

Both England and Scotland seem to be steaming ahead on sharing important information about patients for use in emergencies. But the Summary Care Record is only one part of the grand IT scheme. Arguably much more valuable is the Detailed Care Record, which is meant to hold all of a patients’ medical record at a more local level. With this more in-depth information which will be shared between health professionals in a local area and possibly with care workers and pharmacists, it will be even more important to ensure we’ve got the consent system right.

Herefordshire is celebrating becoming the first county to integrate their NHS and council IT system in a great step forward for more joined-up public services.

Hereford’s ICT director Zack Pandor said:

If you look at the interaction for someone who has had a stroke, they will have a range of requirements. They may need social care services, housing, support from GPs and specialist acute services. To join up these systems and services creates a range of opportunities that are truly immense to provide seamless care to citizens and patients.

While Herefordshire so far has not integrated their health records with other areas of the council, the Isle of Mann is taking it that next step for their children’s services. Programme director at System C, the IT providers for the project explains:

The bespoke system will enable the 35 social care practitioners, working across five different teams in the Children & Families department, to access a shared care record system in order to manage the large volume of information they receive over the course of a case. The system will also be integrated with other departments in the Social Services Division, including the Resource Centres for disabled children and the multi-agency Youth Justice Teams. When appropriate, information will also be shared with both the Primary and Community Health Services on the Island.

Many have been arguing for a long time that a person’s health, housing and care needs are not separate but intimately connected, and service providers need to communicate better to create more rounded care.

However, whil the Isle of Man’s status as a self governing British Crown Dependency means it has more freedom to experiment with the new system, we are still some way off a shared record system here on the mainland.

Should we be following suit?

A hospital sharing a record with a GP seems very natural to most of us. But how would we feel should our health details were accessible to the housing services or care workers? And if they were, would we want these workers to undergo the same confidentiality training that health professionals currently do? Many are worried that from here it is a close step to records being shared with the police or immigration services.

As so often happens with electronic patient records, great opportunities for improvement come up against equally legitimate concerns about protecting patients’ privacy. Steering a path between the two is proving no easy task.

One of the reasons HealthSpace was shelved back in June was the low take-up of patients who chose to access their record in the pilot areas. But Dr Braunold, directional head of HealthSpace, argues:

“Very few patients keep going back if all you can do is just look at your record. It’s like having an online bank account and not being able to do anything with it.”

She is determined to make patient access a central plank of the NHS IT project and hopes patients will be able to order a prescription, make an appointment and view additional information about an illness.

And her faith in the value of a centralised NHS system seems to be mirrored by a survey by E-Health Insider which is being published at just the same time. It shows that 90% of their readers would rather their records were accessible through HealthSpace than through companies like Google or Microsoft, as the Tories have proposed.

The green light has not yet been given, however, and this latest instalment of the HealthSpace drama still leaves lots of questions begging. The future does at least look a little brighter for giving patients the access and information they need to take more control of their own healthcare.

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.