The big vote has now closed. Thank you to everyone who has contributed. We’ll be posting the results here soon.

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.

What should be the principal behind electronic patient records in the NHS?

This poll is closed.

Please vote by creating an account and then rating the options in order of preference from 1 (favourite) to 5 (least favourite).

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.

Huge news for electronic patient records today as the Department of Health announces a halt to the rollout of the Summary Care Record database. The database, which will share key medical details with doctors and nurses across the UK, has been heavily criticised by both medical groups and civil rights campaigners who argue that the patients have not been given sufficcient information and that opting out of the database has been made too laborious.

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.

With the election season officially in full swing, the political parties have published their manifestos, starting an intense campaign process.  Whichever party winds up in power following May’s election, the NHS will be subject to a number of changes that will affect the way we receive care.  Below is a run-down of the parties’ proposals for the NHS IT programme.

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.

You may have missed it, but the last month has seen the simmering disagreement about Summary Care Records explode into open warfare as a number of groups have called on the NHS to halt its accelerated roll-out of the database.

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.

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.