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GPs to contact patients individually to explain care.data opt-out

Hundreds of ‘pathfinder’ practices will test different methods of informing patients about the care.data scheme and how they can opt out of it, under pilots announced by NHS England today.

NHS England said today that that patients will still have to opt out of care.data pilots, as part of an agreement reached with the BMA and the RCGP following a delay to the original launch date of February.

This agreement comes despite the BMA’s policy-making body voting that the care.data scheme should be opt-in only earlier this year.

NHS England has also said that 100 to 500 practices will be involved in the pilot - from the areas covered by the three Leeds CCGs, NHS Somerset CCG, NHS West Hampshire CCG and NHS Blackburn with Darwen CCG.

Those who sign up to the pilots will have to send individual letters, emails or texts to all their patients explaining the scheme, as revealed by Pulse in June.

As part of the pilots, NHS England will review whether to introduce an enhanced service as a means of funding GPs to carry out the work,

NHS England initially delayed the scheme in February, weeks before it was due to be rolled out nationwide, to ‘build understanding’ of its benefits.

This was after the BMA and the RCGP withdrew their support for the scheme - which will extract patient records from GP IT systems and match them with secondary care data for the first time - after warning that ‘large numbers’ of patients had not received information, and that NHS England should write individually addressed letters to patients.

Since the delay, the LMCs Conference voted against care.data remaining opt out, and called for confidential patient data to be anonymised before it leaves the practice.

However, following the review, NHS England has decided that patients will still have to opt out rather than opt in and gave no indication that data would be anonymised at source.

NHS England has said those who do sign up to be pathfinders ‘will be supported in testing different types of communication with patients in those areas, explaining the benefits and risks of data sharing, and making clear their right to opt out from having their confidential information shared for indirect care.’

It added: ‘As part of the pathfinder stage, a variety of communications will be tested with patients which will include an individually addressed letter sent directly to every individual or household from their pathfinder GP surgery, a leaflet and other explanatory materials, as well as emails and texts where the surgery also uses these channels.’

Tim Kelsey, NHS England national director for patients and information, said: ‘Since February we have been listening to the views of the public, GPs and other important stakeholders to hear their concerns about data sharing.’

‘We have heard, loud and clear, that we need to be clearer about the care.data programme and that we need to provide more support to GPs to communicate the benefits and the risks of data sharing with their patients, including their right to opt out.’

NHS England has yet to give details of when the pilots will begin, after saying it would not be held to ‘artificial’ timescales in the wake of the first delay.

But it has hinted that it will look into creating an enhanced service to fund GP practices to take on the work.

It said the pathfinder pilots will specifically look at: ‘Any additional burden on GPs and practice staff; any additional burden on CCGs; options as to how potential burden could be negated or eased e.g. through Local Enhanced Service contracts or Directed Enhanced Services; and other factors such as through use of the data to reduce resource needs in other areas.’

Pulse revealed that GPs were opting their patients out of the scheme by default because of the lack of information, which led to one GP Dr Gordon Gancz from Oxford, having his contract threatened by NHS England.

Readers' comments (16)

  • Tim Kelsey cant convince me he is listening. Just saying it doesn't make it so.

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  • Secure environments GP

    Can the GPC hunt down these pilot practices and express our opinion? None should take this up, let NHSE send out information packs, opt-in forms only, specifically state DO NOT CONTACT your GP, give them a Freephone number which we can also give them. We should make a stand, completely disengage from it as form of protest not least because of all the Data Protection concerns (see medconfidential.org)

    It will be a loss making DES or LES, we have enough strain on appointments without extra ones to explain this to patients or have another 5 minute conversation added to usual appointments.

    There is no way they are going to sell this to me as the best bad idea they have to sort the Care-data problem. Its the worst possible bad idea from a long-list of bad ideas....

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  • Will Pathfinder practices be adequately funded for the expenses they are expected to incur?
    Take individual letters. Hm.
    Average Practice list is somewhere between 6000 and 7000.
    So.
    Printing, ink, paper , envelope cost, staff cost in folding 6500 letters and inserting them into anvelopes, 2nd class postage - all x av 6500.
    Assuming that:-
    a. use mailmerge and
    b.no requirement to have alternative means of communication for blind/non-English speakers/illiterate
    For a practice with a fair proportion patient groups listed in (b), the costs would be a lot higher.
    Not to mention the staff time + oppotunity lost time (staff could have been doing something useful for patients or the practice)
    LESs and DESs come out of general funding: and *can* LES or DES funding be agreed so late in the year?
    I'm just concerned that not only will *practices* incur significant costs at practice level: isn't there a serious risk that, if the whole thing is not funded (transparently) centrally, other services in the CCGs involved will suffer?
    TANSTAAFL - lets see how this will be financed - so that patients can be reassured *their* care won't suffer!

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  • If it's not opt in only then it makes no difference how the practices are funded - it is still wrong.

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  • If you listen to Dawn Monaghan's talk at the EMIS NUG conference it is the NHS England and HSCIC's responsibility to explain what they are doing with the data http://emisnug.org.uk/article/ico-update-national-user-group-caredata-obligations
    I therefore suggest that every letter gives an NHS England or HSCIC phone number to call for further information, or else suggest they tweet @tkelsey1

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  • Surely we must be visiting each and everyone with a bottle of wine/flowers too!

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