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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)

  • If service users object to data sharing they are welcome not to use the service.

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  • Maybe HSCIC knows something about this "independent" review that we don't!

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  • Er med student the service is 'the whole nhs'!

    Why should all data be public or available to governments just because one is using the state health service, the service which crowds out all but the most expensive private options?

    And med student they are 'patients' not 'service users'. You are not training to work for the council (unless you are in Manchester).

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  • |Anonymous | Medical student|05 Feb 2016 5:58pm
    "If service users object to data sharing they are welcome not to use the service."

    Anonymous - the irony. .

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  • Vinci Ho

    By all means , let's see what the report said. But I am afraid NHSE seemed to have failed the first test of respecting these opt out patients. Ultimately , it only strengths my argument from day 1: it is a matter of trust and credibility of this government to implement health matters ,no matter how 'noble' a new idea was.....

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  • To 7.16,
    Like it or not, service users is exactly what they are. We live in a corporate world. The sooner we recognise this fact, the better our chances of survival.
    Cardigans will be replaced by suits which is good because we should dress appropriate to our professional status. Try it. I did and I could not believe how much more respectfully services users treated me.

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  • This is bad news indeed. Are such people entitled to take legal action for breach of confidentiality?

    I bet nobody gets sacked for having screwed it up, either.

    This is the downside to a publicly owned NHS. You can bet your life that if it was privately run, the Government would be all over the corporations like a rash, getting a quango to investigate and impose fines.

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  • The whole problem arose from the wording of the Type 2 optout - which was supposed - and promoted - as refusing permission for identifiable data to leave the HSCIC*for secondary uses*: Terminology - for some unknown reason, either deliberately or inadvertently - managed to get the "secondary uses" bit into Type 1 optouts (identifiable data leaving the practice) - but not into the Type 2 opt out.
    I suspect that the introduction of the "single GP dataset" being developed by the Expert Reference Group (I still haven't found any TOR, membership or outputs from this group) will supercede this discussion: hope I'm wrong.
    If anyone is sad enough, have a look at the Care Data Program Board papers for November 2015
    https://www.england.nhs.uk/ourwork/tsd/care-data/documents/
    The October minutes show the abolition of the Care Data Advisory Group and establishment of the Strategic Overview Board (Chair Lord Darzi, meets quarterly, draft TOR to be circulated to Board members) - as AOB: and the Highlight Report is very interesting - including about the single GP dataset & planned public consultation...

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  • med student: kind of you to inform 'them' of their options...showing even more of his ignorance of options

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  • Seeking healthcare is always an option, it's not an obligation. If they don't like the way their data is handled then they can pay for private healthcare.

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