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Summary Care Records created without patients being given option to opt-out

Exclusive: The Department of Health is investigating a mistake where Summary Care Records were created without patients being given the choice to opt out, Pulse can reveal.

The DH said it could not specify how many records had been created, but that it applied to patients at one practice and they had not been accessed outside the practice.

The DH could not confirm whether or not the records had been accessed by members of the practice before they were withdrawn or if the records had been deleted.

The GPC said that the error rode ‘a coach and horses’ through the promise of informed consent before a SCR is created.

Patients are meant to be sent the compulsory Patient Information Programme (PIP) giving them a chance to opt out of the programme before their SCR is created.

The PIP contains information leaflets and declination forms that give patients 12 weeks to consider whether they whether they would like to opt out of having a record.

A DH spokesperson said: ‘We are aware of one occasion where records were mistakenly created without a PIP having taken place, but none of the SCRs were viewed outside of the practice concerned and the SCRs were immediately withdrawn.

‘We are now investigating the case to make sure this does not happen again.’

Dr Paul Cundy, chair of the joint GPC and RCGP IT committee and a GP in Wimbledon, south London, said: ‘It rides a coach and horses through the concept of informed consent.

‘Patients will be rightly angry, they’ll feel violated. PIPs have been a disgrace from the start. Money was given to PCTs in 2009 and the PIPs are only just being implemented.

‘I think its likely there will be other examples of this, SCRs are being created just as there’s transition in the NHS so PIPs are likely to be overlooked.’

Dr Paul Thornton, a GP in Kingsbury, Warwickshire, said this example highlighted some fundamental weaknesses in the whole programme.

He said: ‘This further illustrates that SCR should not be created without the explicit opt in consent of the patient.

‘And even those that have been created with opt out consent should be checked with the patient at the earliest opportunity.’

He added that SCRs are being created based on ‘out of date’ consent: ‘The vast majority of a huge information packs were sent out some years ago but SCR was not implemented immediately afterwards.

‘It is wholly inappropriate to create Summary Care Records based on this out-of-date patient opt out.’

Readers' comments (2)

  • In Bedfordshire - and I suspect other areas in East of England - SCR is part of the QIPP Practice Incentive Scheme for 2012/13.
    There was a PIP program in 2009/10 which was stopped when the SCR program was halted for review.
    I have checked and CfH/SCR say that Bedfordshire has had a PIP - and it is up to the practices to contact any patients registered since the PIP and explain their SCR options: there will be no further PIP.
    Practices are under extreme pressure at the moment: should SCR be one of our priorities when allocating scarce resources?
    We do not consider that the option of uploading patient records without further information to the patients (if I remember the cut-off date for generating patient lists, this would be from January 2009) who will not have received the original letters is acceptable - and possibly not even legal.
    Really would be interested in other views.

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  • Is this just the one example that got found out? As the previous poster says, the PCTs rushed to take the money for the PIPs but failed to implement them properly at the time (no local press coverage, no concern about patients who had moved etc). Everyone has forgotten those letters years ago, it is highly irresponsible to assume informed consent for all patients in each practice.

    As the procedure requires each practice to sign that all their patients have been informed before permitting an upload, I doubt any practice could actually be sure of that, and hence should not be uploading until they are. But if there is money attached to the upload, and GPs pay is not being increased, it is understandable where their priorities may lie.

    Once created, SCRs are only updated when the consulter has a smartcard active. Otherwise the information only goes up when a card is next used. This makes the SCR information unreliable as it may well be dangerously out of date.

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