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GPC calls for urgent talks over public awareness of care.data scheme

The GPC is to hold urgent talks with NHS bosses about their flagship patient data-sharing programme after practices reported that ‘large numbers’ of patients have not yet received any information about the scheme.

GPC chair Dr Chaand Nagpaul said while the GPC still supported ‘the principle of using anonymised data’ for service improvement and planning, it was ‘deeply concerned’ that the public weren’t being adequately informed.

He said NHS England must ensure the public had been adequately informed and to produce evidence to support this, before any extractions take place.

The care.data scheme will see patient records being extracted from practices each month alongside identifiers such as postcode and NHS number which will be used to link the data with records from other parts of the NHS. A £2million leafleting campaign which saw an information leaflet sent to every household in the UK, ran throughout January, but it was widely criticised as ‘inadequate’ and lacking an opt-out form.

Dr Nagpaul cited a recent survey which revealed two thirds of the public haven’t received an information leaflet and 45% of the public didn’t understand the scheme from the information they had seen or heard. An earlier Pulse survey has shown that GPs are equally confused and that more than 40% plan to opt themselves out of the scheme.

He said in a statement: ‘GPs across the country are telling us that large numbers of their patients have not received any information, and therefore remain completely unaware that their data will be uploaded, whilst others remain worried about who will have access to it and what it will be used for.

‘The BMA continues to support the principle of using anonymised data to plan and improve the quality of NHS care for patients.  However this must be done with the support and consent of the public, therefore patients must be made aware of what is happening to their personal information, what the proposals mean and what their rights are if they do not wish their data to be extracted.

‘The public awareness campaign has clearly not worked and today we call on the Government to ensure public trust in the system by properly informing the public about care.data before the currently planned data extracts commence, and produce evidence this has been achieved prior to upload taking place.

‘As a result we will be having urgent discussions with NHS England about what it can do to address the situation to improve patient awareness, so that patients are able to make a fully informed choice.’

The intervention follows mounting opposition to the scheme. An announcement from the RCGP last week demanded a fresh publicity campaign to address the ‘crisis in confidence’ in care.data, and warned the scheme risked ‘falling at the first hurdle’.

Readers' comments (11)

  • Vinci Ho

    Chaand
    Exercise your duty of candour for our profession on this government please

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  • Bornjovial

    Dear Dr.Nagpaul,

    Our Practice Participation Group members were very suprised and cross when the nature of care.data was explained to them. Now that the PPG has voted against same should we be asking patients to opt in rather than opt out? We are in a dilemma due to the legal ramifications.

    Could GPC threaten to walk out of the NHS without active opt in as people and newpapers will be with us on this issue and we can leave the NHS on a moral high ground as the government no longer seems to value the principles of social health and NHS.
    If we don`t stand for something we will fall for everything.

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  • Dear Dr.Nagpaul,

    Our Practice Participation Group members were very surprised and cross when the nature of care.data was explained to them. Now that the PPG has voted against same should we be asking patients to opt in rather than opt out? We are in a dilemma due to the legal ramifications.

    Could GPC threaten to walk out of the NHS without active opt in as people and newpapers will be with us on this issue and we can leave the NHS on a moral high ground as the government no longer seems to value the principles of social health and NHS.
    If we don`t stand for something we will fall for everything.

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  • Hi Paul.Has your PPG read your comment? .......were people registered with your practice meant to read it.?. Asking because you have seriously misunderstood what you have a duty to do .ie not to ask them to either opt in or opt out but to inform them well enough that they can decide FOR THEMSELVES one way or the other.

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  • Surely there is no option now but to delay the extractions. For the RCGP, the BMA, and the GPC all to be at one in protesting at the failure of the information campaign, it would be very foolish to contine.

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  • nhs england is responsible for this mess by their incredible incompetence right from the beginning introducing this scheme.also there is i believe no evidence that mass health info will provide better info than properly scientifically selected samples.
    they tried to introduce this by sinister stealth then when exposed they grudgingly agreed that people could opt out--without proper informed consent so then they decided to waste more clinical time by passing this task to gps without our consent either and naturally without providing any resources to do same;and simultaneously damaging further the trust between gps and patients.
    this ''organisation'' nhs england is an abject disaster clearly confirming again it is unfit to administer the english health service.the scots and welsh do a better job......

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  • Roger Tweedale

    Looks pretty clear that the public don't really understand what is going on which is a problem in itself - Dr Nagpaul is clearly on the case and I am sure we all wish him all the best.

    Once informed I would encourage the public to consider the risks on both sides of the argument about anonymised (statistical?) data sharing before concluding on a view....

    On one side...the risk that we as a nation fail to prevent death or disease, or are at least impeded in doing so, on account of lack of information.

    On the other side...the risk that information governance infrastructures fail and data confidentiality is breached in some way and that individuals are embarrassed, inconvenienced or even harmed.

    However the real issue for us as patients is "why are the A&E, Out of Hours and ambulance teams still not able to access [FULL and NON ANONYMISED] records that would be helpful (or possibly critical) if they were unconscious and in a life threatening condition"? Most members of the public mistakenly assume that they can.

    On either argument should the sensitivities of the vocal few deny benefits for the masses? Giving an Opt Out caters for both and is a pragmatic solution; whereas Opt Ins are hugely expensive for the tax payer (circa £65m for each Opt In if you assume £1 per letter/envelope/postage - ignoring the many other costs of administering such a process).

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  • The summary care data has the patients summary, medications and Rx which is the most one would need with an unconsious patient /life threatening situation.
    The care.data extracts far more information and is only pseudoanonymised- which means anyone with access to a database linking patient to either NHS numbers (one time breach is sufficient) or can triangulate the data will unlock the identity. Eg with postcode (Royal Mail licensed) and voters list (?free) or phone directory .
    Many insurance companies and employers may find this information very useful although illegal.
    The legal cost of a single breach may run into millions, also regular TV and radio news about same would cost losts less. Personally NHS can do a text based reply for a vast majory (costs peanuts) and leaflets for those without a mobile.
    The advantages of care.data are in research which can be done with completely anonymised data usually (one way hashing algorithm ) and many practices are signed up to many such research databases already e.g QRisk validation.

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  • Has Jeremy Hunt opted out? I think we need to know.

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  • @roger tweedale.

    You say: 'On either argument should the sensitivities of the vocal few deny benefits for the masses? Giving an Opt Out caters for both and is a pragmatic solution; whereas Opt Ins are hugely expensive for the tax payer (circa £65m for each Opt In if you assume £1 per letter/envelope/postage - ignoring the many other costs of administering such a process).'

    I agree. However, whoever came up with the idea of these leaflets as a satisfactory way of informing the general public about this is either stupid or pull the wool over people's eyes.

    No-one I have spoken to about care data (and I am talking of maybe 20 friends/acquantances) knew anything about it. I was the only one. None of them recollect receiving the leaflet.

    This is why I have opted out and most of my friends have. We want to know a bit more about this and have some time to reflect.

    The way this has been handled has left people with a feeling of distrust. That is a shame because I am sure an awful lot of good could come from this data base.

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