back to article Some benefits of digital health to NHS may be delayed by consent model consultation – expert

The realisation of some digital health benefits within the NHS might have been delayed by the extra requirement for consultation on a new consent model governing the use of patient data. A new consent and opt-out model could help clarify constraints that apply to data use in the NHS and promote new digital health initiatives. …

  1. John G Imrie
    Unhappy

    care.data is dead

    long live care.data

    1. AMBxx Silver badge
      Thumb Down

      Re: care.data is dead

      Yep, all the people who successfully opted out of the last 2 versions will now have to opt-out again.

  2. Doctor Syntax Silver badge

    "A new consent and opt-out model"

    When will they learn? Opt-in

    1. JohnMurray

      Never Going To Happen.

      Opt-out allows for the fact that they don't really want your data to be confidential.

      Samples sent from sexual health clinics to pathology are anonymised by using postcode and DOB....

  3. cantankerous swineherd

    the usual load of old bollocks. the NHS think that removing name and address whilst leaving NHS number in anonymises the data.

    then they offer to pass a law that threatens to really really slap someone's wrist ever so hard if they do a join with the NHS number table.

    these people think we're thick.

    1. Woodnag

      Protection

      I would happily let my aggregate stats be shared if the law mandates that if/when the data leaks, the CIO of NHS goes to prison to 2 years (1 after good behaviour) as absolute minimum sentence.

      1. Anonymous Coward
        Anonymous Coward

        Re: Protection

        The CIO the Minister for Health and the CEO of the company that purchased the info all go to Jail (and not a cushy country club either) for 5 Years after Good behaviour.

        or you could just make them live in an A&E ward for 3 Years. wearing Hospital gowns eating Hospital food and using bed pans and urine bottles. and never going out of the ward unless it was for a weekly rectal exam.

        Should make people take notice of security.

    2. Lord of Cheese

      spouting crap

      As an NHS analyst I can tell you you are talking utter shite, as someone who actually needs access to patient record level data to ensure patients are getting the best possible outcomes and not getting out of hospital the wrong way it is now nigh on impossible to get hold of data with NHS no in clear unless you have a very clear right to view for direct patient care or for contract challenges. In fact even just getting hold of fully pseudonymised non PI data is seemingly nigh on impossible as it is all now tied up in IG hell.

  4. David Roberts

    Still skirting the issue

    Nobody trusts the government not to sell the data on when cash gets tight.

  5. Anonymous Coward
    Anonymous Coward

    A new consent and opt-out model

    How about a fucking OPT IN model instead!!!

    1. Anonymous Coward
      Anonymous Coward

      Re: A new consent and opt-out model

      While you were anaesthetized, we removed one of your kidneys and sold it. Hey, you didn't opt-out.

  6. Anonymous Coward
    Anonymous Coward

    no opt out

    Unless you are a UK resident. Anyone who has lived in the UK in the last 10 years but doesn't now, cannot opt out.

  7. Anonymous Coward
    Anonymous Coward

    @cantankerous

    Using NHS number as a unique identifier makes a certain amount sense - it's not data that can EASILY be linked to the individual. However, to do the job properly they need to do better: proper one way pseudonymisation so that records can be linked but no-one can find the identity of the patient

  8. JohnMurray

    If you think this is a problem that is ever going to be solved, you have not read this:

    http://digital.nhs.uk/article/3638/Personal-data-access-FAQs

    Note that local authorities can hold your health data for some/various reasons...that alone is a recipe for leaks....

    1. Adam 52 Silver badge

      Maybe I'm thick, but I don't see how any of this meets the "only as necessary" and "with consent" requirements of the Data Protection Act.

      The ICO isn't helping by insisting the the NHS use an opt-out model.

  9. Anonymous Coward
    Anonymous Coward

    Any Anon Patient data snippets is real valid data, when compared against what Google already holds.

    You can bet Google are relinking/reassembling the anonymised UK Patient data they got hold of 'for research purposes only' back to the Calendars and Gmail accounts of the UK users they have.

    Google Calendar:

    Patient X.

    Redditch Alexandra Hospital Appointment 2pm August 20th 2014 Radiography? Check.

    Dr X. Check.

  10. JohnMurray

    "One of the schemes to replace care.data is called the “Single GP dataset”. The government’s review into care.data proposes to send all patient records from family GPs to the central database without the express consent of patients. Once in the system, it can be “sold” to any customers of the ‘Health and Social Care Information centre”, including private companies.

    The government buried this announcement on the day of the report into the Iraq War. It is hoping no one will notice this new land grab on our medical records. We can’t allow the government to sneak out the same medical record data scheme under a different name.

    Our community successfully fought the original care.data scheme. Thanks to the power of our community we rose up and forced the government to backtrack and ultimately scrap the scheme. Now the government is hoping to flog off our medical records, but this time under a new name and without those pesky safeguards. We have to act to stop the privatisation of our medical records"

    Change.org seems to be worrying!

  11. JohnMurray

    https://www.whatdotheyknow.com/request/single_national_gp_dataset_2

    1. David Pollard
      Pint

      Dr Neil Bhatia

      The pint is a token of my appreciation, echoed I'm sure by many others, for Dr Bhatia's continuing efforts to hold the NHS to account.

  12. JohnMurray

    Stranger and stranger.....

    http://www.pulsetoday.co.uk/home/finance-and-practice-life-news/gps-excluded-from-consultations-over-secret-plans-for-general-practice/20032477.article

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