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The Summary Care Record: What's gone wrong?

Delays are not uncommon for Government IT projects, but even by the tardy standards of the National Programme for IT, this is a big one.

By Steve Nowottny

Delays are not uncommon for Government IT projects, but even by the tardy standards of the National Programme for IT, this is a big one.

When Connecting for Health officially launched the Summary Care Record in March 2007, the plan was for a rapid early adopter rollout, with the rest of the country to follow in short order.

The first early adopter area, Bolton PCT, confidently predicted that within three months ‘the majority of patients in Bolton will have a Summary Record'.

More than a year later, the project is stuck in the mire, as internal papers obtained by Pulse reveal. The first flagship pilot, it turns out, has been beset by technical glitches, confidentiality concerns and a series of crippling delays. Just one in four patients have had their records uploaded and records have been used just 167 times.

But the bad news for Connecting for Health is not confined to Lancashire.

We can reveal that in other pilot areas the project has also slowed to a crawl. Bury PCT, the second early adopter, still hopes to have all the records in early adopter practices uploaded ‘by the end of the summer'. But the fifth pilot, at Bradford and Airedale PCT, has yet to upload a single record four months after its launch.

Confidentiality fears

The Bolton minutes have also raised fresh fears over confidentiality. Project leaders had initially said that in A&E healthcare assistants, but not receptionists, would be given access to records – itself a controversial move, but one intended to mollify GPs who had told their patients only clinicians would use the records.

But minutes of a meeting in February reveal that the PCT subsequently back tracked, and now plans to give receptionists access so long as ‘they ask the patient directly.' By the PCT's own admission, this explicitly contradicts a guarantee to patients that non-clinical staff ‘will not have access to your records'.

Connecting for Health insists final decisions on access procedures should be made by local trusts. But combined with the proposed ‘secondary uses' of records and the revelation last week that pharmacies would access to care records, it seems to many privacy campaigners that their worst fears are being realised.

Peter Luff, Conservative MP for mid-Worcestershire, made the headlines in February after his local GP persuaded him to pre-emptively opt out of having a Summary Care Record.

‘I'm not happy about the level of access that would be enjoyed to what are actually very sensitive details,' he says, adding that a number of high profile Government data breaches, beginning with the child benefit records fiasco, only heightened concerns.

The early adopter rollout has also been struck by severe software compatibility problems with the major suppliers. So far just two, InPractice and iSoft, are online, with the most widely used, EMIS, not going into testing until the end of this month.

Getting GP buy-in to an the unpopular project has proved even harder. A poll last October by Bolton LMC found two thirds of the town's GPs opposed the care record rollout and a similar poll last month of committee members showed nothing had changed.

In other early adopter areas, notably Bury and Dorset, care records have had a more positive reception, but nationally, there remains huge scepticism among GPs. In February, a BMA poll of 219 doctors became the latest to show the extent of opposition, with 81% saying they would not want their own records stored on a central database and 93% having no confidence in the Government's ability to safeguard data online.

So stung was Connecting for Health over adverse publicity it attempted to impose a media blackout, refusing for months to reveal the location of the sixth early adopter pilot – which Pulse finally revealed in February to be South West Essex PCT. It too has yet to upload a single record.

University College London's independent evaluation of the early adopter projects, which was due to make a final report next month, has now been told to continue its evaluation for a further two years. Connecting for Health's bold target that every patient in England would a Summary Care Record by the end of 2008 looks like it was made more in hope than expectation.

There is some good news for Government IT bosses.

With the uploading of care records for more than 150,000 patients now completed in early adopter practices, there has still been no catastrophic security breach. The additional workload in answering patients' concerns, a major fear last year, has proved largely unfounded with many patients apparently unconcerned.

Dr Richard Jeeves, a GP locum in Bury, who has been hosting roadshows talking patients through the project, says: ‘The comment I get from patients time and again was "I really thought the health service was already doing this.'''

The clinical advantages in having a patient's medications, allergies and reactions to medication easily accessible are also starting to be realised, according to Dr Gillian Braunold, clinical director for the Summary Care Record and a GP in Kilburn, north London. She says despite ‘teething problems', seeing care records come to fruition has been ‘very exciting'.

‘We're getting benefits from accessing records in unscheduled care environments,' she says. ‘That will encourage other practices.'

‘It's important if you find there's a problem, you slow things up a bit,' adds Dr Braunold. ‘You don't just go like a bull in a china shop and keep putting out products when people have said we would like this improving.'

‘Some of the other PCTs are really frustrated because they're ready for their product. But this is the reality of developing and working with suppliers'

Yet despite the time and extraordinary amounts of money lavished on it, the next three months could prove make or break the Summary Care Record project.

As well as the now-interim report from UCL next month, a National Audit Office progress report into the National Programme for IT due at the end of May and Lord Darzi's Next Stage Review in June will help determine the shape and scale of the wider rollout.

The BMA, meanwhile, is having to decide whether to come off the fence. Despite rank-and-file members at last year's annual representatives meeting voting to ‘advise all members not to cooperate with centralised storage of medical records as this seriously endangers confidentiality', the body has adopted a cautious approach.

Rethink

GPC leaders have repeatedly spoken out over the dangers posed by care records, but others in the BMA hierarchy are understood to be less hostile. Either way the BMA's current guidance to members – await the outcome of the independent evaluation – will need to be rethought.

Dr Paul Cundy, chair of the GPC IT subcommittee, savages the Bolton project, warning patients have been ‘effectively deceived' over receptionists being given access to records. ‘The BMA's absolutely fundamental view is that explicit patient consent should always be the gold standard, and that's unchanged,' he says.

Back in the early adopter practices, some GPs are doggedly pushing ahead. The Kearsley Medical Centre in Bolton has begun uploading ‘full' or ‘enhanced' Summary Care Records, with a far greater level of information beyond medications and allergies. But uploading a full record requires a patient's explicit consent, and reception so far has been mixed. While most new patients now have one, just one in three of patients with chronic illness contacted have so far opted in.

Dr George Ogden, a GP at the practice, says as the guardians of the record GPs still have major concerns, despite apathy from many patients.

With many twists and turns yet to come in its chequered history, those concerns do not look like going away anytime soon.

Timeline: chequered history of the Summary Care Record

February 2007 – Connecting for Health tells trusts all patients in England will have care records by the end of 2008

March 2007 – Summary Care Records launched; Bolton PCT becomes the first area to trial the records, followed later by Bury, Dorset and South Birmingham

June 2007 – BMA formally adopts a policy of non-cooperation with care records rollout over confidentiality fears

November 2007 – Data security dominates news agenda after HM Revenue and Customs admits losing personal details of 25 million people

December 2007 – Bradford and Airedale PCT chosen as fifth early adopter pilot

February 2008 – Pulse reveals South West Essex PCT as sixth early adopter – though record uploading there is still yet to begin

April 2008 – Minutes from Bolton PCT reveal widespread delays in care records rollout

May 2008 – University College London independent evaluation of early adopters due to report; National Audit Office progress report into National Programme for IT due

Summer 2008 – further rollout of care records to ‘Fast Follower' PCTs expected

Unknown – national rollout of Summary Care Records gets underway

Computer Dr Gillian Braunold Dr Gillian Braunold

It's important if you find there's a problem to slow things up a bit.

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