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Records database may need consent

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Patients may in future have to give their explicit consent before their care records are uploaded on to the new central NHS database, representing a major policy shift in the health service IT programme.

Each summary care record contains information on current and past medication, adverse reactions and known allergies. It is one of the key planks of the health service’s national IT programme being piloted by NHS Connecting
for Health.

NT understands that CfH’s summary care record advisory group (SCRAG) is considering a pilot scheme to test an ‘opt in’ consent model, which could form the basis for the overall summary care record system.

The decision will be made pending the outcome of pilot projects where patients were assumed to have consented to their records being uploaded unless they opted out.

Bolton and Bury PCTs have acted as pilot sites for the existing ‘presumed consent’ model that SCRAG is assessing. Bradford and Airedale, Birmingham and Dorset PCTs are also early adopter sites.

SCRAG is due to publish an evaluation report of the existing pilots later this summer. It will then decide whether to test the ‘opt in’ model, with a new pilot mooted to start in the autumn.

A CfH spokesperson said: ‘SCRAG, which is made up of all our key stakeholders, will be considering all findings and recommendations from the evaluation report, before deciding what changes, if any, need to be made.’

However, an independent evaluation of the early adopter sites, published by University College London in May, concluded that the current consent model was ‘overly complex and unworkable’. It recommended that SCRAG considered alternatives.

Last month NHS chief executive David Nicholson told the Commons public accounts committee that the record scheme would not be fully operational until 2014, citing the consent issue as a sticking points. ‘We have to get the system into the right place in terms of consent,’ he said.

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