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RCGP demands new publicity campaign to address 'crisis in confidence' over scheme

The RCGP has intervened dramatically in the row over NHS England’s flagship NHS data-sharing scheme, saying that managers must ‘act immediately’ to address GP and patient concerns over the programme.

The College said in a statement published today that a new national information scheme is needed ‘urgently’ and that the scheme is at risk of ‘falling at the first hurdle’ due to a failure to communicate the potential benefits of the scheme.

The call came as the GPC also expressed concerns over the way the programme was being run, suggesting that NHS England should delay the first extraction next month to ensure that patients were adequately informed. will see patient records extracted from all GP practices, linked to secondary care data and made accessible to researchers and private companies.

Supporters of the scheme have argued it will have significant benefits for both commissioning services and medical research, and NHS IT chiefs have insisted that patients’ data will usually only be shared in anonymised or ‘pseudonymised’ form, with any releases of identifiable data subject to strict privacy safeguards and a public interest test.

RCGP honorary secretary Nigel Mathers said that although the college remained supportive of ‘in principle’ there was a ‘crisis in public confidence’ over the way it was being implemented.

He said: ‘The inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing.

‘We urgently need a renewed national push by the authorities to ensure that patients are fully informed, in clear terms, about the benefits of the scheme, what their rights are, and what their rights to opt out are.’

He added: ‘The Government and NHS England need to act immediately, otherwise further questions will inevitably be asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed.’

The move comes after Pulse revealed that over 40% of GPs intend to opt themselves out of scheme, and that as few as 15% of patients and just half of all GPs and practice staff understand the scheme despite a national campaign to inform the public that records will shortly be extracted from GP practices.

GPC deputy chair Dr Richard Vautrey told Pulse said that negotiators were also ‘disappointed’ in the way that the publicity campaign was being conducted and that NHS England needed to communicate ‘openly and honestly’ with patients.

He told Pulse: ‘We have been disappointed in the way that the leaflet campaign has not reached every household, often sandwiched between pizza leaflets and other types of junk mail. So that many patients won’t have read it.

‘Those that have read it, it’s not being clear enough to patients what the pros and cons of opting out really are, and what the project is all about.

‘I think we do need to see a much more open and honest, and transparent information sharing with patients for them to make an informed decision about what they do in these situations.

‘I don’t think it’s been handled at all well, and I think we need to go back to first principles. If that takes time to do then it should be given the necessary time to do it. If the project is sound enough, then it will sell itself. If there are concerns, then patients will recognise this and opt accordingly.

‘I think we have to take as long as necessary, and I think we shouldn’t be pressured into a spring or April deadline.’

Dr Tony Calland, chair of the BMA’s Ethics Committee said: ‘After pressure from the BMA, NHS England has carried out an information campaign including sending an information pack to every practice in England which contains posters for the surgery. It has also organised a leaflet drop to every household in England.  This campaign has been extensive, but the BMA recognises the importance of ongoing communications with patients, especially as some GP practices have reported that not all patients are fully aware of their options.’

A spokesperson for NHS England said: ‘We’re absolutely committed to ensuring the public are aware of the benefits of this initiative and their rights to opt-out. This is why we have sent a leaflet to every household in England. We have also provided leaflets and posters to every GP practice; articles in all the major newspapers; information on the NHS Choices website; information via social media; a video animation; as well as information cascaded via 350,000 patient groups and charities.

‘This is an ongoing exercise of engagement. We are actively talking with doctor’s groups, patients and charities about how we can better and further explain this programme and people’s right to opt-out. Throughout this programme we have met with the RCGP and will be meeting with them again soon to discuss their concerns.’

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  • RCGP - RCGP sign - RCGP house - online

Readers' comments (25)

  • Neil Bhatia

    Too little
    Too late

    Just 3 weeks to go before uploads and NOW they pipe-up.....

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  • Are we happy to allow the uploading of data of those patients who we know lack lack the capacity to understand the 'patient information leaflet' sent through their letterboxes mixed up with pizza menus?

    #9Nu0 !!

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  • Am I alone in observing the amazing transformation of Clare Gerada from Dr Bean to Stalin?

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  • If the RCGP has lost confidence in the scheme they should jump up and say so and support those members who refuse to comply.

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  • yes why not oppose the scheme wholeheartedly if there are concerns? Urgent need for transparency is obvious but there are multiple problems in this scheme. It needs to be stopped.

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  • As said before we need legal challenges to this ASAP, get your finger out RCGP, I'm seeing little benefit here from my fees at the moment

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  • Well done RCGP. Where is the BMA statement?

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  • Vinci Ho

    This is better than they are saying nothing but the college clearly is trying to be politically correct , hence carrying political baggages. The bottom line if people lost faith and trust in certain hierarchy and government , no matter how 'right' a policy looks like , it is not to be accepted . Spirit of a true scholar should be upheld by the college in my opinion.......

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  • to me the college looks more worried the scheme will be scrapped than it does about informed consent

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  • I agree, the leaflet does not really explain to patient that their seconday/community care data is already fished then putting the onus on to GPsurgeries to code records with two codes to ensure secondary care data in not onwardly used - disgraceful publicity campaign but we knew it was been done under sufference and not supplying the forms to patients to opt out was one step too far leaving GPS to source their own - then have the nerve to sanction GPs who feel very uncomfortable with the situation -

    I doubt very much that GPs will have considered opting out patients who don't have capacity to opt out themselves

    I thought we were supposed to live in a democracy - I am beginning to wonder

    No decision without me - what a lie that was

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  • Azeem Majeed

    As part of a session on primary care data for the Health Informatics module on the Imperial College Master of Public Health (MPH) Programme, I asked students to work in two groups to present arguments for and against the NHS Care.Data programme. You can view the presentations at

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  • Vinci Ho

    This is no longer just an academic issue. It is about credibility , accountability , honesty and trust.
    History repeats itself all the time . An ideology of good nature can be twisted and distorted when it falls into the wrong hands with power on implementation .

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  • Did you know that if one of your patients has a
    9Nd1. - No consent for electronic record sharing
    that the Care Data extraction will ignore that code and take the data anyway?

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  • Still not even received our info leaflet at home. How can anyone expect that all citizens can have made an informed decision and have acted on it before the deadline?

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  • I would search on any existing opt outs for SCR or Local Health Record, or indeed the 9Nd1 code mentioned in an earlier post, and contact those patients in regard of Care Data.

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  • A quote from BBC website Health section:
    "225 parliamentarians have recent or present financial private healthcare connections, 75 of them are MPs, 81% of those MPs are Tories including David Cameron and Andrew Lansley - the architect of the Health and Social Care bill."

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  • If the data extraction is supposed to be anonymous then how will we know if the scheme doesn't just take the data anyway despite the code?
    This has to be delayed. Patients who had capacity and understood that their records were confidential, but now don't have capacity for whatever reason, shouldn't have their records uploaded purely on principle.
    Dislike the information in the above post. Dislike the current government.

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  • The two codes we have been using are:
    9Nu0 to prevent upload at all
    and for those patients who do not mind been part of research but do not want date passed out of HSCIC 9Nu4 and prevent third party use

    Please note patients who have previously opted out of SCR must register again as the SCR record opt out does not prohibit CARE DATA extraction

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  • Christine Earwaker 11.35am

    What happens if people have both codes set?

    I do not want my data to leave my GP surgery. But I also know that data has already been taken from hospitals and is stored in the HSCIC databases. How can I prevent data leaving my GP surgery and prevent it leaving the HSCIC databases?

    It seems I'm damned if I do and damned if I don't with the two codes you mention (which are currently BOTH set in my own records). There is a fundamental contradiction in the use of them and nobody can tell us which ones we should ask to be set if we want to retain our privacy to the maximum level allowed.

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  • This comment has been removed by the moderator

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  • More luddite comments, typical of clinicians, who seem intent on holding up the use of technology in the NHS as long as they can.

    Surely the proper response should be "research does indeed need better patient data, and we, the RCGP will engage immediately and deeply with DH or NHS England or whoever to iron out our real security worries."

    Personally, I believe the scheme is technically a Bridge too Far, but that too should be debated coolly.

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  • Sharing clinical data is one thing but sharing my NHS number and postcode has nothing to do with improving care for any patient.

    If someone was able to break into the White House computer, who is going to stop them breaking into the NHS, not forgetting all the NHS staff that would be happy to share information for a nice fee .... hang on, isn't that what wants to do?

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  • Not luddite comments, Richard. You're wrong on this. The people trying to push this through are clever and are aware of what they've been proposing all along..... why was the engaging, info gathering, passing of accurate information and then piloting done in the correct manner in the first place (go figure).......then there's the security worries followed by the potential distrust on how the info could be used as mentioned earlier (implications of info passed to commercial companies who might start send you stuff! .....not least).

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  • apologies . I meant to say '....why was the engaging, info gathering, passing of accurate information and then piloting done in an incorrect manner in the first place (go figure).' Sorry!

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  • when do i get a leaflet..even an intelligible one..a potentially good scheme ----the consent for which has probably been permanently destroyed by serious incompetence in initiation.hopeless.i now think real life is a parody of 'yes minister' rather than the other way round......................

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