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Over 40% of GPs intend to opt themselves out of care.data scheme

Exclusive A substantial number of GPs are so uneasy about NHS England’s plans to share patient data that they intend to opt their own records out of the care.data scheme, reveals a Pulse snapshot survey.

The survey of nearly 400 GP respondents conducted this week found the profession split over whether to support the care.data scheme, with 41% saying they intend to opt-out, 43% saying they would not opt-out and 16% undecided.

The snapshot survey gives the first indication of GP opinion over the scheme, and comes as leaflets with information about the care.data programme are in the process of being sent to every household in England.

Care.data 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.

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.

Pulse revealed last week that identifiable patient data is already being regularly approved for release by the NHS, with 31 releases since April 2013 under a little-known exemption clause that will apply to care.data when it begins extracting data in March.

GPs who intended to opt-out their records from the care.data scheme in Pulse’s snapshot survey said that this was because of concerns over the safety of the data and the way the scheme was to be conducted.

Dr Ian Williams, a GP in Tunbridge Wells, Kent said: ‘I wish to opt out as I am concerned about identifiable data being moved around and passed on to third parties.

‘I would have no objection if the data held on my records was “pseudonymised” before being extracted from the practice records.’

Dr Marie-Louise Tidmarsh, a GP in Horsley Woodhouse, Derbyshire, said that she would be opting out as her details could easily identify her to her neighbours.

She said: ‘I think patients have been misled about the “confidential” nature of the data extractions, and it is not clear to whom the data may be sold.’

But Dr Francesca Lasman, a GP in Huntingdon, Cambridgeshire, said that she would be opting in as it was important to ensure that real-life data was available to inform clinical practice.

She said: ‘I think it is vital to develop an understanding of how best to manage complex co- morbidities which exist in general practice.

‘Drug companies and studies focus on one problem but real data from people with multiple conditions and on many medications gives at least a chance of some meaningful analysis and a start for the best approach to tackling prevention and treatments.’

An NHS England spokesperson said: ‘Sharing information about the care you have received helps us understand the health needs of everyone and the quality of the treatment and care being provided, and our work to improve data collection and usage is supported by both the RCGP and the BMA.

‘Everyone has the right to register objection, and to have that objection honoured.’

Do you plan to personally opt out of the care.data scheme?

Yes - 41%

No – 43%

Don’t know 16%

Source: Pulse snapshot survey of 391 GPs

About the survey: Pulse launched this survey of readers on 21 January 2013, collating responses using the SurveyMonkey tool. The 28 questions asked covered a wide range of GP topics, to avoid selection bias on any one issue. The survey was advertised to readers via our website and email newsletters, with a prize draw for a Samsung HD TV as an incentive to complete the survey.

As part of the survey, respondents were asked to specify their job title. A small number of non-GPs were screened out to analyse the results for this question. This questions was answered by 391 GPs, of whom 296 were partners, 59 salaried GPs and 36 other GPs.

Readers' comments (19)

  • Opted my entire family out already

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  • "Over 40% of GPs intend to opt themselves out...."

    ...And the other 60% didn't understand the question.

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  • Entire family opted out - and when I contacted my GP practice to check they received the letters, they were all going to do the same

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  • David Bush

    "GPs, who have a statutory obligation to allow extractions but also a prior obligation as data controllers to inform their patients."

    No, actually we have a prior obligation not to allow such extraction, which is a completely different thing.

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  • Well, from care.data:

    ¨Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system, managed by the HSCIC. Once this information has been linked, a new record will be created. This new record will not contain information that identifies you. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules¨

    I wonder how many people in the street have the same birthdate!
    Laws tend to change to reflect need.

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  • John Rowell … having my NHS number does identify me, go to any hospital /clinic and give that number and they have access to my records!

    My postcode identifies me, go into any shop and purchase an item, give your postcode and they will tell you where you live and who you are!

    This is data about an individual and fro that reason alone, it should be fro the patient, and only the patient to decide and it should be an 'opt in' not an 'opt out'!
    I pity any GP that 'opted me in' without my consent, who do they think they are that they can hand over patient information without patient consent!

    There was a huge campaign on awareness around 'strokes' so why not do the same so that patients are really aware of what this stealing their data really means? Surely patient data belongs to the patient and their consent to share has to be a legal right?

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  • I still haven't received the leaflet. When are they being distributed? And when is the deadline to opt out?

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  • I only got my leaflet this week - not in an envelope, looks like junk mail, could easily be thrown out by mistake.

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  • I live in the North and we have all got the leaflets this week. They are glossy, flimsy things. I've heard several friends say how they thought it was one of those advertising things that falls out of the newspaper or that they nearly threw it away. i rang the helpline and was informed the leaflets are being distributed 'area by area' and we have 4 weeks to respond from the date of the receipt they know when each area got the leaflets. The really scandalous thing is that they do not tell you how to opt out, they say contact your GP - and I as a GP have NOT been informed of what we should tell our patients! I know for a fact many surgeries are getting this wrong,and telling patients to opt out of the summary care record, which is a different thing to care.data. This is how to opt out: https://dl.dropboxusercontent.com/u/14156524/caredata_trifold.pdf
    and this is what should be being dropped through our letterboxes at the same time as those uninformative leaflets!

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  • When I tried to opt out at my surgery, I was given the form to opt out of SCR, which I do not want to opt out of!! If practice managers don't know these are different things, how many patients will incorrectly believe they have opted out?? Why is there no official opt out form? Shambles.

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