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700,000 patients continue to have data sharing objections ignored

Patients who had opted out to having their GP data shared back in 2013 are continuing to have their objections ignored, despite assurances from the NHS that they would be honoured by January 2016.

A spokesperson for the Health and Social Care Information told Pulse that it had been unable to rectify the situation which saw 700,000 patients’ objections to their data being shared across the NHS ignored.

This is despite pledging to sort out the problems by January this year.

Pulse revealed last year that HSCIC had been forced to ignore patients’ objections - many made during the aborted launch of NHS England’s flagship record sharing drive, care.data - because acting on them would have prevented patients receiving invitations to life-saving screening programmes.

It told Pulse in November that it had ’developed a system which will allow us to uphold the… opt-out that patients have registered to the HSCIC sharing their identifiable data for purposes other than their direct care. It will be operational by January 2016.’

But this week they have told Pulse that they had not yet implemented the objections.

A spokesperson said that a review into consent and opt-outs, to be published by Dame Fiona Caldicott, is to be published ‘soon’.

They added: ’HSCIC will implement the outstanding Type 2 objections in due course.’

The HSCIC told MPs in January 2015 – almost a year after NHS England paused care.data days before it was due to launch - that they would have to write to potentially millions of patients to explain that their information had continued to be shared.

In May, Pulse revealed HSCIC estimates had identified 700,000 who had registered a ‘Type 2’ objection to care.data, which was intended to prevent data being sent from the HSCIC to third parties such as commissioners and researchers.

Readers' comments (17)

  • hopefully 'anonymous' again!med student will spend some time in the real world.and then hopefully push off into private practice

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  • Dear Med Student, perhaps another profession is more suitable for you with that attitude towards patient privacy. I do pay for my health care via taxes, if not at the point of delivery. However while you have the option for private healthcare that isn't an option for most, so if I opt out I expect my data to stay that way.

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  • Now, if a GP made that sort of error, he would have been hung by thumbs. Quite disheartening comment from our medical student - Are you certain that you've got into the right profession my dear?
    We all have a moan about patients from time to time but respecting basic rights which includes the right to privacy is the foundation due to which we, as a profession, enjoy the highest level of trust in this country.

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  • Folks - its alright. When they sue, as data controller, its you who'll hang for it. Sweet dreams.

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  • Dear Med Student - as said above you truly are entering the wrong profession - patient have the right to be treated confidentially and with their dignity - Perhaps you have not been taught that yet

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  • Well, Med Student..the DPA says that people have a say in the way their data is handled. notwithstanding the DPA "opt-out" given to the HSCIC by the H&SCR act, the relevant practice is the data controller for the "service user/patient" (delete as inappropriate) and has to respect the users preference. Of course, the practice CAN NOT REFUSE TO ALLOW THE HSCIC TO TAKE THE DATA but in doing so if the patient has refused consent, is breaking the law. Endof. Now we come to the latest shenahigans, NHEngland, and the care.data advisory group, have thrown all privacy advocates off the board and stacked the deck with private industry "advisors".
    Leaving the practices with being criminals, and the HSCIC as being patient data vendors: http://www.theregister.co.uk/2016/02/08/care_data_nhs_kicks_privacy_advocates_out/

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  • The medical student seems to confuse the sharing of identifiable patient information together with their personal clinical data for direct patient care (eg between GP and hospital) with hscic obtaining identifiable patient information to use for non clinical purposes.
    GP data are much more detailed than hospital episodes statistics data that the hscic holds.

    Patients have a right to have their wishes respected that their identifiable and detailed GP data are not shared /used for non clinical purposes.
    If the hscic received non-identifiable data then I would have no issues.

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