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Three in four GPs believe care.data should be 'opt in'

Three-quarters of GPs believe that NHS England should abandon the ‘opt out’ system of patient consent used in the controversial care.data scheme before records are extracted in the autumn, a Pulse survey has found.

The multi-topic poll of 427 GPs found that only 19% were supportive of the ‘opt out’ approach currently adopted by NHS England, which presumes that patients have consented to having their records shared unless they explicitly object. Some 75% supported a switch to an ‘opt in’ system.

The findings come as the GPC’s lead negotiator on care.data said the GPC would be discussing the possibility of an opt-in system with NHS England as part of ‘urgent talks’.

The strength of feeling shown by the profession will put more pressure on NHS England to radically rethink the implementation of the scheme after it announced last week that records extractions would be postponed for six months while it worked on ‘additional practical steps to promote awareness with patients’.

The survey found that as many as one in 12 GPs (8%) are considering automatically opting all of their patients out of the scheme, despite the statutory data sharing obligations which have been forced on them by the 2012 Health and Social Care Act, while 35% said they were undecided about doing so.

Pulse revealed last month that Dr Gordon Gancz, a GP in Oxford, had been issued with a ‘remedial notice’ by his area team for telling his patients he would be opting them out of the scheme and offering them the chance to opt in. Dr Gancz has been subsequently told that the notice – which threatened breach of contract if he didn’t comply with the remedial notice - was a ‘misunderstanding’.

The Pulse survey also reveals that GPs are supportive of a much wider publicity campaign ahead of the scheme’s rollout, with almost nine out of ten GPs - 87% - calling for a national television and radio campaign. Similarly, 89% said existing NHS England publicity materials needed a rewrite to make the implications of data-sharing clearer to patients and 90% said NHS England should make it easier for patients to opt out, for example including an opt-out form.

Some 65% of respondents thought that patients should receive an addressed letter, following criticisms of NHS England sending unaddressed leaflets that some fear could have been mistaken for junk mail earlier this year.

Dr Beth McCarron-Nash, the GPC negotiator leading on care.data and a GP in Truro, Cornwall, told Pulse the GPC was having ‘urgent meetings’ with NHS England.

She said: ‘The system has been so damaged, that actually what we need to do is rewrite the rules, and I think that what we will be discussing with NHS England is the possibility of an opt in.’

‘I believe there’s two options: one is to make it a truly opt-in system, and considering the concerns from patients and GPs that’s what I believe they should do; or they truly pseudonymise it, at source.’

‘Either way, patients must be fully informed and the position of the GPC is that they must fully rerun the education campaign, that it must be fit for purpose – which it wasn’t previously - and that patients must be communicated with directly to make sure they’re fully aware of the implications of what is happening with their data.’

Grassroots GPs were similarly in favour of an opt-in system.

Dr Sanjeev Juneja, a GP in Kent, said: ‘Patients should have to opt in and not be opted in if they don’t opt out.’

‘There are migrants - one third of my practice population have problems with the English language and would chuck the letter in rubbish instead of taking the trouble to read it.’

Dr Kamilla Porter, a salaried GP and the vice-chair of South Essex LMC, argued the publicity campaign should focus on greater online engagement.

She said: ‘Postage and printing is such a waste of public resources. Surely there should be more online communication with patients, for example inviting patients to register with their emails and NHS numbers so they can sign up for NHS alerts.’

Meanwhile Tim Kelsey, NHS England’s national director for patients and information, appeared before MPs on Tuesday to explain why the scheme was postponed.

He told the health committee: ‘I took the decision that we were going to extend the period before collections begin [by] six months precisely, to deal with some really big issues that have been raised to my attention by our partners in the BMA, RCGP, by a whole range of stakeholders with whom I’ve spent an enormous amount of time listening.’

He explained that NHS England would use the break to address ‘the very real concerns … about the degree to which GPs under very heavy workloads are suddenly finding that they need to communicate about this new program to patients’.

Mr Kelsey added: ‘They’re feeling they haven’t had enough time, nor enough support in some cases, they feel they haven’t had opt-out forms and there are some basic things they feel they need more of.’

‘So certainly we’re going to be talking with them about how we can support them much more closely to make sure that they are equipped with the right information to have a proper conversation with their patients.’

About the survey: Pulse launched this survey of readers on 24 February 2013, collating responses using the SurveyMonkey tool. The 29 questions asked covered a wide range of GP topics, to avoid selection bias on any one issue. The survey was advertised to readers via our website and email newsletters, with a prize draw for a Samsung HD TV as an incentive to complete the survey.

As part of the survey, respondents were asked to specify their job title. A small number of non-GPs were screened out to analyse the results for this question. These questions were answered by 427 GPs.

 

 

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Readers' comments (10)

  • When this undemocratic mess fails,which it will all I ask is that someone is held accountable for the £50 million wasted and is deblt with appropiately.Usually in the NHS failure is promomted hopefully not this time!

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  • Vinci Ho

    (1) Finally saw Dr GG on BBC news in last weekend , he was talking about foundation trust. OMG, he is our Gandalf(Lord of the Rings, The Hobbit)!! I am a fan!
    (2) Once again , just to remind people , like section 75 , this is one of the aliens dropping out of sky from the mothership HSCB
    (3) when an authority had lost people's trust and faith , whatever 'righteous' policy it tries to push forward , it will lack credibility. Simple to ask' have I got the right NOT to trust what you said?'

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  • 3 in 4?

    Did the other 1 in 4 not understand the question?

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  • If it's opt in then there wont be enough numbers to justify the project. If the data was being kept purely within the NHS then I dont see a problem with it being opt out therfore perhaps the solution is to have it opt in for anyone willing for their data to be made available/sold to anyone outside of the NHS. Personally, my only issue is that I dont trust the governement with it. I trust the NHS but not the government!

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  • >If it's opt in then there wont be enough numbers to justify the project.
    ---

    Well if the public is so supportive, and it's so easy to make a case for this project, this shouldn't be a problem, should it?

    HSCIC should have to make and prove the case for it.

    This is akin to me wanting to use my neighbour's lawnmower for my lawn, me putting up a sign saying I'm going to take it but only in my kitchen where he can't read it, and then stealing it when he's out.

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  • Patients wont go out of their way to opt in even if they dont really care whereas patients will go out of their way to opt out if they care.

    I agree with 50% of the lawn mower arguement. The request for use of the lawnmower hasnt been clear enough however I think that the ownership of the lawnmower and who has a right to use it and what for is a matter for debate. If you had bought the lawnmower for your neighbour to look after his lawn then it would be a bit harsh of him not to let you use it to cut your lawn however if you were to use it to cut other peoples lawns and to make money from doing so then that's an entirely different matter!

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  • The problem is that the gardener has the lawnmower, and he's being asked to bring it around without being paid!

    "Patients wont go out of their way to opt in even if they dont really care whereas patients will go out of their way to opt out if they care. "

    That may well be true, but it being easy doesn't make it right. Let's face it - there will be a seriously large number of people who have their data uploaded because they don't hear about this or they don't understand. In no other area of medicine was this be accepted as informed consent. When I ask patients (or relatives) what Care.Data is (or the idea behind it) they mostly haven't got a clue...

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  • I don't think it is the lawn mower that is the problem: it is the lawn. Whose lawn is it? Just because you mow a lawn doesn't give you the right to sneakily let everyone have a look at it. The owner isn't going to like it if he wakes up one day and every Tom Dick or Harry is sitting on the lawn.

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  • No matter what happens now, the NHS has lost the trust of the owners of the NHS .... the patients.

    They tried to wiggle this arrangement in via the backdoor, nobody I know has received any information re this scam, and nothing they do now would win my trust.

    What an absolute waste of NHS funding!

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  • I have written to our GP three times (hand-delivered letters) over the past 8 weeks, specifically requesting that the two care.data 'opt out' codes be added to our medical records. I have received no reply.
    The practice web site makes no mention at all of the care.data programme.

    Is it possible that practices will receive a financial incentive for minimising the number of patients who request an opt out? Could a GP anonymously confirm/refute this suspicion please?

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