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MP tables motion to halt care.data rollout as 2,400 patients call helpline

An MP has tabled a Parliamentary motion calling for the controversial care.data scheme to be ‘indefinitely’ delayed until further consultation takes place and patients are asked to opt into rather than opt out of the programme.

The Early Day Motion from Roger Godsiff, the Labour MP for Birmingham Hall Green, says signatories have ‘no faith whatsoever in Government assertions that patient data will be coded in such a way as to guarantee anonymity’ and expresses concern over the ‘consistent history of large scale data mismanagement and leakage across Government’.

Early Day Motions rarely result in a Parliamentary debate and are usually used by MPs as a device for publicising issues. But the move reflects growing scrutiny and concern about the care.data rollout, which has attracted a raft of front-page headlines in the national press this week and prompted intense debate.

It comes as the Health and Social Care Information Centre (HSCIC) revealed that a phoneline set up to answer queries from patients regarding the data-sharing scheme has received almost 2,400 calls in the first few weeks of a national publicity campaign.

Leaflets with information about the care.data programme, which will see patient records extracted from all GP practices, linked to secondary care data and made accessible to researchers and private companies, are in the process of being sent to every household in England. Supporters of the scheme have argued it will have significant benefits for medical research, and NHS IT chiefs have insisted that patients’ data will usually only be shared in anonymised or ‘pseudoynmised’ form, with any releases of identifiable data subject to strict privacy safeguards and a public interest test.

But the scheme has caused consternation amongst GPs, who have a statutory obligation to allow extractions but also a prior obligation as data controllers to inform their patients, while privacy campaigners have also expressed major concerns.

Mr Godsiff said he was fundamentally opposed to patients being asked to opt out of rather than opt in to the scheme.

‘The whole process begins to undermine fundamentally the long established principle of patient confidentiality, and is a recipe for confusion,’ he said. “The NHS just seems to think patronisingly that all it needs to do is to throw in health-speak phrases such as “improve delivery”, “for the benefit of the service” and “in the public interest”, and people will just roll over and allow their data to be taken because it’s for their own good.’

‘I have absolutely no faith in assertions by Government that patient data will be coded in such a way as to guarantee anonymity…There is also the Government’s record as a whole on data management or rather, chronic mismanagement and leakages. I believe that patients themselves, not NHS England, should determine when and where their own medical information is used and for what purposes.’

Dr Neil Bhatia, a GP in Yateley, Hampshire and a campaigner on IT issues, welcomed the motion: ‘Anything that brings it out into the public, and gets people talking about it, they mind find out about it. It can only be a good thing, whether or not this goes through. It gets a discussion moving.’

Dr John Lockley, a GP in Ampthill, Bedfordshire, said: ‘I think it’s extraordinarily remiss that they should be extracting all this private information, without first getting permission. And I think that it is, therefore, very good that a member of parliament is drawing attention to that fact - but I don’t think a MP should need to be drawing attention to that fact.’

He added: ‘I do like the idea of using data like this, for research and for organising the NHS, but I believe very strongly that it needs to be done ethically, and that it could be done and should be done in a different way at the moment in order to make it ethical.’

Meanwhile a spokesperson for the HSCIC said its patient information phone line had answered ‘nearly 2,400’ calls since it was set up on 6 January, as of Monday this week.

‘As we have not operated a comparable patient information line before, it was not possible to set an expected baseline [for expected level of calls],’ the spokesperson said.

The top five questions from patients were:

- Can I change my mind?

- I can’t get to my GP practice to object what should I do?

- How long have I got to decide if I want to object?

- Do I need to do anything if I’m happy for my information to be used?

 

The Early Day Motion in full

PATIENT CONFIDENTIALITY AND CARE.DATA

That this House views with the greatest concern plans by NHS England and the Health and Social Care Information Centre HSCIC) known as care.data , the purpose of which is to extract and link large amounts of patient data as part of NHS care in order to improve the delivery of healthcare and to benefit researchers inside and outside the NHS;  shares the concerns of the Information Commissioner, who delayed the start date for the harvesting of patient data by a year to spring 2014 in respect of the confidentiality of the extracted data, lack of public awareness and the extent of information sharing;  welcomes the plans by NHS England for a public awareness campaign but believes that these plans, which operate on the assumption of ‘presume consent’ unless individuals ‘opt-out’, fundamentally compromise the long established principle of patient confidentiality and will lead to unnecessary confusion; has no faith whatsoever in Government assertions that patient data will be coded in such a way as to guarantee anonymity, particularly so it reserves to itself the right ‘in the public interest and for the benefit of the health service’ to allow access to identifiable data and by its consistent history of large scale data mismanagement and leakage across Government; believes that it should be patients themselves and not NHS England who should determine when and where their own medical information is used and for what purposes; further believes that if the Government wish to improve delivery of healthcare they should first address current, deep-seated issues of health mismanagement, accompanied by a lack of transparency  and oversight in the NHS ; and calls on HMG to delay indefinitely the introduction of care.data until further consultation has taken place with patients and patients groups  and at the very least the principle of ‘opting-in’ to such a scheme has been accepted as a central principle.

 

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Readers' comments (16)

  • Perhaps Mr Godsiff would also like to ask why a program is being implemented *before* a Business case has been developed or Treasury approval obtained?
    http://tinyurl.com/p79d4lt

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  • Vinci Ho

    'Good' enough for patients to have all kinds of questions about their own medical record when they have full access 24/7(also switching GPs). Now they also have questions of who is the third or even fourth party reading their data and information on the record. Yes. More questions and more questions . Keep your life busy.
    How lucky are we to be in this NHS?

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  • Given that the government will essentially be holding a copy of everyone's medical records, couldn't they help to field the queries from the patients?

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  • In Out of Hours and Urgent Care sharing patient data is crucial. Not being able to do so would be a trip back into the dark ages. It is fundamental to patient safety that Out of Hours, A&E, and hospital admitting wards are able to know as much about a patient as possible.

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  • Re M Taylor comment - this is NOT Summary Care Records data which is still being uploaded and which A&E can access if theya re minded to - this is data going to other people for other nefarious means!!!

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  • Perhaps I'm just lucky, M Taylor. In a dire emergency I've never needed a patient's history, in all other cases enough information has been provided by the patient family friend or collegue. Lucky for 22 years and counting!
    This is about making money, taking 'control' form GPs who generally act more ethically than companies will with your data. When the NHS is private and your data controller is SERCO/VIRGIN/G4S/Tesco or other we will hear of and see far more problems than now

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  • re the comment from Michael Taylor, may I emphasise strongly that the care.data extracts aren't intended for direct patient care.
    By comparison, SCR uploads, and SystmOne's eDSM are specifically for direct care and it is important that these should be supported.
    It is also important that patients shouldn't muddle up SCR and eDSM with care.data and opt out of all of them because that won't be in their direct medical interests

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  • >In Out of Hours and Urgent Care sharing patient data is crucial
    --

    I'd like to echo what the other poster stated. Care.data is NOT available at the point of care and will not directly help OOH, A+E etc etc

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  • i agree and it should be the patient's right to choose. If we want to truly empower the patient, then we should give the patient the access to the record and let them choose who accesses it and in what manner. at present GP's will be held responsible for how the data is used. the DVLA can sell on their information to third party's even though I am sure the DVLA would not sell this and would have adequate controls. can the same be said for the third party?
    https://www.gov.uk/data-requests-dvla

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  • A completely agree with Mr Godsiff. I understand that releases to CQC recently have included the patient names and personal details of patients who attended hospital between two dates last year. I cannot see the justification for this particularly when some of the patients will not have consented to this (myself included). This project will have what will undoubtedly be portrayed as unintended and unforeseen consequences - but they wont be. This cannot have been unforeseen and therefore not really unintended given the large number of objections and warnings provided by clinicians and managers who know only too well where this can go so badly wrong. Who will sue the SOS first I wonder and what will be the defence? The greater good no doubt - I'm not buying that and I don't think that patients will either. A patient suggested to me that the best way to stop this would be to "vote to remove the bobble headed giggle twits that are behind schemes like this". I have to say I have great sympathy with the enlightened chap. Enough is enough and the sooner this is torpedoed the better.

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