Could people power force Labour to axe the NHS database?

By Kirsty Walker Political Correspondent

A MASSIVE public revolt threatens to derail Labour’s plans to store patients’ medical records on a Big Brotherstyle database.

Tens of thousands of patients have already demanded that highly-personal details are excluded from the controversial Health Service scheme.

Critics believe the growing rebellion could eventually force ministers to abandon the idea.

A similar health IT project in Iceland was dropped last year after 11 per cent of the population objected.

Campaigners here hope to achieve the same result by persuading patients to use their little-known right to opt out of the database.

Already 75,000 have demanded the removal of their personal details from the system – but to achieve 11 per cent around 6.5million would need to sign up.

The mighty display of ‘people power’ is another blow to the NHS’s crisis-hit £20billion computer programme.

One of its central planks is a database called‘Spine which will eventually store around 50million patient records. NHS staff anywhere in the country will be able to access these details.

Five primary care trusts will start piloting the scheme this year, with a national launch set for late 2008.

Patients were initially told they would have no choice over whether their medical information would be stored online. But ministers were recently forced to perform a U-turn amid concerns over privacy and security.

Instead, patients will be able to opt out after viewing their proposed record online or by asking their GP for a copy.

But if they fail to do so within a certain time limit, they will be deemed to have given consent and their records will be automatically stored.

NHS manager Helen Wilkinson, who is masterminding the Big Opt Out campaign, said she was already receiving around 100 calls a day from patients who fear sensitive information such as drug or alcohol abuse or a sexuallytransmitted disease could fall into the wrong hands.

More than 60 per cent of GPs are concerned the system would be vulnerable to hackers and unauthorised access by public officials from outside the NHS and social care.

Miss Wilkinson launched the campaign in November after discovering she had been wrongly labelled an alcoholic after she saw a consultant about routine surgery.

The error was put on her file by a clerk.

She has now forced the Health Department to wipe all her records, including basic identification and medical details, from NHS files, meaning in her case she wouldn’t be allowed treatment on the NHS.

She said: ‘There are lots of people out there who are still scared of IT. The Government hasn’t even started the pilots of Spine yet thousands have already written to their GPs asking to opt out.

‘My main concern, as an NHS manager, is that millions of patients are unaware that this is going to happen.

‘People are very worried that their information could end up in the wrong hands.’

Miss Wilkinson also warned that although patients can opt out of their medical records being shared, they will in general be unable to stop their demographic details – such as name, address, NHS number, GP details and phone numbers – being stored on Spine.

The Daily Mail has been contacted by a growing number of readers and doctors concerned about Labour’s plans. Yet the DoH insists there are huge benefits in having instant access to everybody’s records on a single database.

The idea is that doctors will be able to retrieve a patient’s details, even if they need treatment away from home.

Ministers also claim it will end the problem of missing records, currently stored on paper.

Last night former home secretary Charles Clarke told Channel 4’s The Insider: ‘The most personal of all the official files held about us are our medical records. Prying eyes could uncover information that could be used to threaten a career or a relationship.

‘But instant access to this same information, through a computerised national database, could also save your life.’

To contact the campaign go to http://www.thebigoptout.org or call 01494 882458.

k.walker@dailymail.co.uk

In the first of a two-part interview, BMA chairman, James Johnson, tells Joe Fernandez why patients will decide ultimately the National Programme for IT’s fate.

Patients must exercise their right to choice and decide if they want their records fully uploaded onto the spine, BMA chairman, James Johnson, has told E-Health Insider in an exclusive interview.

The BMA wanted the government to create an opt-in system, as opposed to the opt-out system that is being delivered, and now Mr Johnson is calling on patients to make their opinions known once pilots of the project begin in six primary care trusts.

“The opt-in/opt-out argument proved difficult and controversial and so we hope the pilots appear to be not so controversial. What patients need to understand is that sensitive data going in is very minimal. At this stage the only clinical data being entered is current prescriptions a patient is receiving and any known allergies.

“The bottom line is that this is an opt-out system and we wanted an opt-in system. These pilots will give patients a defined period of time to go to their GPs and view either their electronic records or their paper records and see what will be loaded onto the spine. If they don’t want data to go up, then they can ask for it not to be stored and it will not go up at all. Patients voicing their opinions is pretty crucial.”

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The BMA’s policy is that explicit consent should be obtained before any healthcare information is uploaded onto the spine…

…plans for ‘sealed envelopes’ to restrict sharing of such data would not be in place for the pilots and are not likely to become available until 2008/9…

Summary care records planned for end of 2008

27 Feb 2007

Connecting for Health is planning for every patient in England to have a complete Summary Care Record by the end of 2008.

Guidance prepared by CfH for strategic health authorities makes it clear that the Clinical Summary Record will be implemented in two phases. Phase one, due to begin by Easter, will consist of an early adopter implementation of the GP part of the summary care record (SCR). Phase two, to be complete by the end of 2008, will use the findings of the early adopter phase for a full roll-out across England of the SCR by the end of 2008.

The guidance sets out in detail how the implied consent model for the early adopter sites will work and patients’ options for withholding consent. If patients do not opt-out an initial text based summary of their medications, allergies and adverse reactions will be uploaded to the spine. If patients choose to dissent from data sharing, a patient’s summary record will be restricted to the authoring GP only.

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This resulted in a protracted correspondence in which my question was repeatedly ignored.

Eventually I got the following response:

” .. inevitably, those people who choose not to have a care record on the spine will lose the benefits that the record will provide, including the likelihood of swifter appropriate treatment, greater convenience, direct access to personal health information and easier shared participation in care decisions …”

So, that’s a “no” then.

Call to use Spine to find drug trial patients

19 Feb 2007

The BioIndustry Association has expressed an interest in tapping into the NHS’s Spine database and using patient information to identify potentially willing drug test subjects.

Speaking to the Scotsman, the association’s chief executive, Aisling Burnand said: “The UK has a real opportunity because the NHS’s patient records make this a unique place in the world to study clinical trends. We are not there yet, but that is the vision.”

A BioIndustry Association spokesperson told E-Health Insider that Burnand was responding to suggestions made in the Cooksey Review into UK health research funding last December, and that other research organisations would hold similar interests.

In his foreword to the review, Sir David Cooksey, said: “The potential offered by the new ‘Connecting for Health’ IT database which will contain the medical records of the 8m inhabitants of England and should be accessible (with strong patient confidentiality safeguards) for important research, including clinical trials and subsequent pharmaco-vigilance studies of newly released drugs.”

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