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forms to be included with the information being sent to patients, and demanded that comments made by the BMA be withdrawn from a promotional video made by NHS Connecting for Health.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

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.

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.

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.

Although this is currently just a suggestion from the opposition, handing data over to a private web provider raises a whole new set of questions – ones which we will no doubt need to face as healthcare becomes increasingly electronic.

Taking the records system outside the NHS could be a way for patients to gain increased control over their own records. Unlike the NHS’s proposed HealthSpace, patients on Google and Microsoft can not only view and comment on their health records but also add to them, delete them or change them. While this will no doubt infuriate various healthcare professionals, it would give patients greater ownership over their healthcare – one of the aims of the IT programme.

But it would also re-cast previous debates about privacy and security. These companies make their money from advertising. John Caulthard of Microsoft argues that sharing patient data with companies could be ethical and beneficial, allowing the NHS to target those with potential health problems. But could we also see nightmare scenarios where those with a history of anorexia were targeted by beauty experts, or by dieting pills? And would Google staff be added to the list of hospital staff, clinicians and GPs secretaries who can get access to our records? Regardless of privacy policies, such a system would have greater security risks with data moving between the NHS and private providers. Privacy advocates have long been critical of the amount of data which Google accumulates on its users – search histories, emails, documents and much more – but the storage of health data would be far more significant.

Like so many questions at Who Sees What? this one comes down to who the public trusts more with their personal information. At present, the answer is far from clear.

In the pilots of SCRs, patients were informed by letter that SCRs were going to be introduced and given three months to contact their doctor if they wanted to opt out. After three months, if they had not contacted their doctor, it was assumed that they consented to have a record and one was created for them.

Once a record had been created,  it could not be deleted in case it was required as evidence in any later kind of investigation or audit. Therefore, anyone who missed the three month window would be stuck having a record whether they wanted one or not.

However, under the new rules there is at least the potential of allowing patients the opportunity to opt out of the system the first time they seek treatment after the record is created. If this is put into practice, patients will be able to take the decision of whether or not to have a record by discussing the risks and benefits with their doctor and coming to a decision about whether or it’s for them -  a huge step forward for informed consent.