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Care.data ‘paused’ yet again due to confidentiality review

All pilots of the care.data scheme are ‘paused’ until the New Year due to a review of security of confidential medical information in the health service, claims a CCG.

The CCG says the care.data pilot schemes have been paused because health secretary Jeremy Hunt has ask Dame Fiona Caldicott, the data guardian for England, to provide advice on the wording for a new model of patient consent and ‘opt-outs’. 

NHS Somerset CCG said they were planning a mail-out of information to patients registered with the 56 participating GP practices in the pilot towards the end of this month, but that will now not go ahead because of the review.

A spokesperson for NHS Somerset CCG told Pulse that they were under the impression that all pilot sites would not be able to begin work again on the pilots until January 2016.

What guidance is being developed?

  • Dame Fiona’s review will develop ‘clear guidelines for the protection of personal data against which every NHS and care organisation will be held to account’. She will also provide advice on the wording for a new model of consents and opt-outs to be used by the care.data programme.
  • The CQC will also carry out a review of standards of data security for patients’ confidential data across the NHS.

Source: NHS England

He added: ‘The purpose of the care.data pathfinder pilot has always been to help NHS England with the testing and evaluation of patient literature and the process by which coded patient data might eventually be extracted from their GP medical records.

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‘Family doctors are as eager as patients to ensure that we get any process right and patients are provided with the necessary reassurance to know and understand that information from their medical records will continue to be kept safe, secure and confidential.’

The scheme to extract and share patient data from GP records was delayed for the first time in February 2014 after concerns that the public were not aware of its benefits, with a national leafletting campaign failing to reach two thirds of houses.

New pilots of the scheme look set to be delayed again, although NHS England told Pulse that work in ‘pathfinder’ areas ‘continues as planned in the autumn and ‘will form part of the review’.

The care.data scheme has been plagued with problems, health managers have already admitted they have been unable to implement 700,000 patient opt-outs to GP data being shared, with GP leaders claiming that their admission demonstrates the ‘mess’ that the Government has created.

NHS England’s national director for patients and information Tim Kelsey said: ‘The new measures announced will strengthen the public’s confidence in the security of their data.

‘We recognise that patients have concerns about data safety and we will do everything we can to protect their information and build their trust. It is imperative we listen to the public and address all their concerns.

‘Jeremy has stressed the importance of care.data and we will continue to work with the pathfinder areas over the coming weeks and months.’