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NHS England bows to confidentiality concerns and launches £2m national publicity campaign on

NHS bosses have backtracked on their insistence that GP practices are solely responsible for informing patients about the progamme and have announced a major £2m publicity campaign on their plans to extract and share confidential data next year.

The publicity campaign - previously ruled out by NHS England in August and modelled on the information campaign for Summary Care Records - will involve sending information leaflets to all 22m households in England in a four-week leafleting campaign informing patients about the data extractions plans during January 2014.

After the campaign, patients will have four weeks to tell their GP if they want to opt out of their personal medical data being forwarded on to the Health and Social Care Information Centre (HSCIC), before any extraction of patient data begins.

NHS England, which announced the move today together with the HSCIC, said the leaflets would clearly set out how will work and how patients can opt out, while also setting out ‘the benefits it will bring’.

The GPC welcomed the change of heart of NHS managers, which comes after calls from GPC to be more transparent with patients about the ‘fundamental’ shift in how NHS will be using their data. will see HSCIC routinely extracting identifiable patient data from GP practices and hospitals, which can then be shared in identifiable or de-identified forms to other sections of the NHS and to third parties, such as researchers.

But NHS England ruled out a national publicity campaign, saying ‘practices are responsible for ensuring patients are made aware of the changes and to direct patients to further information, which should be made available in the surgery’ and giving GPs approximately eight weeks to make patients aware before extractions would begin.

These extractions have now been delayed until next year after opposition from LMC leaders and campaigners who said patients should be better informed about the NHS’s plans to use their personal data.

HSCIC chair Dr Kingsley Manning said that NHS managers had decided to roll out ‘more slowly’ to allow GPs to fully inform patients.

He said: ‘The duty on the HSCIC to preserve and protect confidentiality and privacy is clear and we are determined to uphold it. The huge benefits offered by the development of are also clear but can only be delivered in the context of public understanding and trust.’

‘Valuable feedback from doctors and members of the public has led us to decide to take this more slowly, in order to support GPs in discussing this with patients and to ensure the public in general is aware. We cannot achieve this transformation in enhanced knowledge of the effectiveness of health treatments without public support and understanding.’

GPC IT subcommittee chair Dr Paul Cundy - who called for a publicity campaign in Pulse earlier this year - said: ‘The BMA is extremely pleased that NHS England have announced a major national awareness campaign designed to raise awareness about changes to the way that patient data is handled. It is vital that we ensure the public is fully aware about these proposals.’

A spokesperson from the Information Commissioner’s Office welcomed the move: ‘It is a fundamental principle of the Data Protection Act that people are aware of how organisations may use or disclose their personal information. We expect all of the organisations involved to use the time between now and the Spring to make sure patients are aware of these changes, how their information will be used and how they can object to this if they wish to do so.

‘As the organisation with primary responsibility for their patients data, GP surgeries have an obligation to ensure that information about the use of their data is actively communicated to patients. They should satisfy themselves that the national and regional communications campaigns organised by NHS England, along with their proactive communication at a local level, ensures that, as far as practically possible, all patients are aware of these changes.’

Tim Kelsey, NHS England’s director of patients and information, said: ‘I believe the NHS will make major advances in quality and patient safety through the use of this data. At the moment, the NHS often doesn’t have the complete picture as information lies in different parts of the health services and isn’t joined up.

‘This programme will give NHS commissioners a more complete picture of the safety and quality of services in their local area which will lead to improvements to patient outcomes.’

Readers' comments (21)

  • I have had an interesting patient query today at The Big Opt Out. A patient sees a Consultant for a chronic disease and pays for own medication. The patient is fumming that the NHS is using his details from his private treatment annoymously for QOF and now Patient has now told his Consultant he must cease communicating with his NHS GP. Patient is going to unregister and find a private GP.

    This raises an interesting question I assume H&SC Act does not cover the extraction of data which is generated from private care?

    I shall be asking the ICO for guidance. It places GP's and Consultants in an unenviable position if they have not sought explicit patient, as they have not done in the case of this patient.

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  • >Patient is going to unregister and find a private GP

    Well that's a result then.

    Privately generated information is included as when you receive information back from private sources and code it appropriately (e.g. surgeon performs Lap Chole and you read code it) it becomes part of the GP record and thus will be picked up by

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  • I shall be asking the ICO for guidance. It places GP's and Consultants in an unenviable position if they have not sought explicit patient,

    The whole point of the HSCA is that explicit consent does NOT have to be sought - and if rumours are to be believed there wasn't even going to be an opt out until the BMA intervened.

    This is what the public gets with a weak medical profession. Still, this is what they voted for...

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  • @anonymous 2.16 My point yes HSCA does not require explicit consent for NHS data but what about data generated in the private sector.?Is that covered too? What is the ICO position?

    @anonymous 2.11 yes patient also has an issue with SUS/HES data that a London Trust sent to HSCIC too. Again it was data from private care.

    Patients view I am damming well paying for this the data generated from private care belongs to me. If NHS wants it, they will have to make me an offer!

    My feedback is that patients where understanding first time round with SCR but not with its a whole different ball game.

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  • >Is that covered too?

    Once it becomes part of the GP record, it is covered if it is part of the HSCIC dataset - *regardless* of source.

    GP records don't usually separate the 'source' of a diagnosis in a machine readable way - a GP record is a record of the patient's entire medical history and whilst some practices may 'free text' the source of a diagnosis for completeness this is largely not searchable and not done by everyone.

    I agree that it's outrageous that the state will have a copy of nearly all medical records but as mentioned it's the what the democratically elected government has done so our practice will be complying are per the law.

    If you are involved with the Big Opt Out could I please ask that you edit your opt out forms to 1 side of A4 or at least redesign so that the surgery can discard the 2nd page? They are most welcome but the current format requires double the paper, double the scanning etc.

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  • @anonymous 2.34 thanks for the feedback re opt out forms. Yes as former Practice Manager I agree the system does not differentiate between NHS and data generated by the private sector.

    The first question is legally can private data been extracted is it cover by HSCA? Secondly from a DPA point of view should the GP and Consultant be gaining explicit constent for data generated to be private sector and paid for by the patient to be used by the NHS?

    These are questions for ICO, regardless of what is happening on ground, the question is what is the legal/ICO position on this?

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  • @Helen,

    I'm sure the ICO will answer but I think you will find that they make no distinction between 'privately' originated data and other data. A Lap Chole or Hyptension diagnosis etc is a historical record of what happened to the patient, and so will be covered by the HSCA. In this context it's a bit like asking "Who owns history?" :)

    Additionally, practically speaking, there is no read-code level opt out available - it's either all out or all in as I'm sure you are aware and so patients with such concerns should just opt out.

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  • either this was a backdoor attempt by stealth or deliberate..what a dreadful example they set that in an nhs post stafford is supposed to be more transparent.a disgrace.

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  • @anonymous patient unregistering from GP. However it does need guidance to ensure GP/Consultant acting within DPA.

    Patient will making complaint too also objecting to private data being used for QOF.

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  • I hope they are going to put the hotline number on the leaflets and refrain from telling patients to make an appt to see their GP

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