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NHS managers rule out publicity campaign for controversial data extract programme

The responsibility for informing patients about the controversial care.data extracts scheme, in which identifiable data will be extracted from GP records and sent to the Health and Social Care Information Centre, will fall solely on GPs after NHS England ruled out a national publicity scheme.

In a move criticised by campaigners, NHS England said that it will engage with patient, voluntary and charity groups to support raising awareness, offer ‘regional support’ and will set up a website for patients, but will not run a national publicity campaign.

Instead, it will be GP practices’ responsibility to inform patients about the changes, and provide them with information on how they can raise an objection to their data being shared, NHS England said. A range of materials has already been jointly produced with the HSCIC, BMA and RCGP to support this, it added.

Pulse reported earlier this month that GPs could face legal action and prosecution under the Data Protection Act if they don’t take ‘reasonable steps’ to inform patients that identifiable data will be extracted from their records. The data is then sent to the HSCIC, where it will be shared with commissioners, researchers and private companies in a de-identified form.

Health secretary Jeremy Hunt announced earlier this year that patients who object to their data being shared will be able to ask for a flag to be put in their records. Reasonable objections will be honoured, except in certain situations such as a civil emergency, he said.

GPC had earlier this year called for a publicity campaign over the changes. However, a BMA spokesperson agreed GPs are best placed to raise awareness. The spokesperson said: ‘There are certain awareness raising activities that GPs are best placed to undertake, such as posters, leaflets and information on their websites.’

A spokesperson for NHS England said: ‘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. This is important to meet fair processing responsibilities under the Data Protection Act. This means they need to inform patients of which data they are required to share and also to provide details of how patients can raise an objection if they wish to stop their information from being used in this way.’

However campaign groups maintain that patients are not being adequately informed of the changes. Mr Roger Goss, co-director of campaign group Patient Concern, said NHS England’s efforts were ‘pathetic’.

He said: ‘NHS England’s plans to warn everyone that patient confidentiality is dead and buried are pathetic. Unless every household is notified, Jeremy Hunt’s promise of the right to opt-out will be meaningless.

He added: ‘Putting the responsibility entirely on GPs, without central funding to notify every practice patient, won’t work. GPs are too pressed both financially and time-wise to cope with this additional work - especially as it is going to undermine and make their relationships with their patients more difficult and stressful.’

Mr Phillip Booth, founder of campaign group medConfidential said patients need to be told in plain language what information is being taken, what will happen to it and who will have access.

He said: ‘Patients must be alerted to the simple fact that their confidential information will be extracted from their GP-held record in identifiable form, and no longer be under the control of the doctor they shared it with. This overrides what most people understand as medical confidentiality and people need to be told directly in plain language exactly why this is being done, what information is being taken, what will happen to it, who will have access - and what they can do to stop it if they have concerns.’

Readers' comments (6)

  • Can we put a flag on everyone's data? If it is our responsibility to check the patients understand. If they do not know they do not understand. If they do not understand they do not agree. If they do not agree they opt out.

    Can it be that easy?

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  • I don't find the official poster to inform patients very informative
    tinyurl.com/kqu6fbs
    What do you think?
    EMIS NUG has an alternative at http://www.emisnug.org.uk/article/emis-nug-update-caredata-27th-july-2013

    Which will you be using?
    Even SCR - with very limited data uploads - had SHA level patient information campaigns!
    btw - it looks as though there will only be 8 weeks to inform patients.

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  • Surely the default position should be no data extraction unless patient has given express and informed consent and opted in? I don't understand how any other approach tallies with our duty to protect patient confidentiality, especially if the data extraction process is to be applied retrospectively to information provided and documented in the past for the express purpose of direct and individual patient care.

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  • I 100% agree that no information about me should be shared with anyone, unless I give my consent.

    My body belongs to me and any information relating to it, is also my personal property.

    Who do the NHS think they are selling off personal information, and then they expect us to trust them ... you really must be joking!

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  • This comment has been deleted by the moderator

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  • Why would third parties want identifiable information
    if they are barred from contacting the individual? Or will they be barred? What protections will be in place? Too many wormholes in this one I think. Agree with previous comment that this completely negates the rules around medical confidentiality.

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