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.

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.

Things are finally getting going for the Summary Care Record. During the last few years, there have been pilots in Bury, Bradford, Bolton, Dorset, South West Essex and South Birmingham. But now we’re leaving the trial stage behind, and aiming for roll-out across London and then the rest of England in the next few years.

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.

Two stories that have come to our attention this week highlight a tricky aspect of electronic patient records which has been rather pushed to the sidelines.

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.

Electronic patient records haven’t had much good press lately. As smarthealthcare’s Patient From Hell notices, there seems to be a general consensus that the ‘Spine,’ which will hold patients’ basic information such as allergies at a national level, is ‘insecure, possibly illegal and crash-prone.’ But there’s less talk of the benefits will electronic patient records may bring, or of the issues with alternatives to the proposed system. It’s somewhat refreshing, therefore, to read Roz Foad’s recent defence of the system, and it’s potential:

In a couple of years … your local hospital will be able to securely pull up a summary of your patient record (after you have given consent, unless unconscious, when there is an override with audit trail) and know your background and all the information they need to treat you. This is already happening in pilot sites in the UK. They can fill in a template which will feed information back into the GP system.

…If you need access to care outside normal surgery hours, your surgery phone will direct you to an ‘out of hours’ service. The doctor there will be able to pull up details of your previous treatment to care for you safely, and feed back what they have done into the GP system, ready for your next appointment. This is already happening in parts of the country.

Your GP will be able to access your secondary care record details which the hospital has submitted to the Department of Health for payment, thus viewing your entire pathway through care. The second biggest GP system, In Practice Systems, has now signed a contract to exchange data with Emis Systems, so that 80% of the country will be able to use these facilities. Of the other two systems, one is in discussions with the big two, and the other has a different coding system, which has its own problems, but is now more open to co-operation.

On top of this your surgery can, if it wishes, offer you on line re-ordering of your prescriptions, booking your GP appointments, a way of sending messages to your GP, and a means of accessing your records from anywhere in the world.

It looks like the NHS hasn’t given up on providing patients with access to their records, after all. This week Connecting for health announces they’re hoping to do more work on their patient access website Healthspace.

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.