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NHS England looks at expanding care.data extractions to include 'sensitive' patient information

Exclusive NHS England wants to expand its care.data extraction scheme to also include ‘sensitive’ patient information, despite initially saying these conditions would be excluded.

Currently, diagnoses such as HIV or AIDS, sexually transmitted infections and medical history mentioning abortions, IVF treatment, convictions or abuse have been classed as ‘sensitive’ and are set to be excluded when the Government’s flagship record-sharing scheme goes live. However Pulse can reveal that NHS England is preparing to consult on expanding the scheme to include some or all of this information in the extract, as well as who has access to the database.

The proposals were revealed in minutes from the latest meeting of NHS England’s care.data advisory group, where care.data programme director Eve Roodhouse presented a paper suggesting the extended scope. The minutes read: ‘Eve presented… a paper which sets out proposals for expanding the scope (e.g. by expanding the data collected from GP practices) and utility (e.g. who has access to the linked data). The details of the consultation process to support this future roadmap is currently being worked out.’

They added: ‘It was proposed that this be supported by a consultation process to ensure that scope change submissions are appropriate.’

However GPC said care.data was ‘controverisal enough’ without any expansion of the dataset.

GPC deputy chair Dr Richard Vautrey said: ‘The original plans for care.data were controversial enough and the anxiety they caused led to the current delay. This suggested mission creep will only add to the concerns held by many patients and clinicians about this project and make them even less likely to support it’s wider roll-out.’

A privacy protection group represented on the care.data advisory group expressed concern that patients may come to withhold information from their own GP if they are concerned about confidentiality.

medConfidential coordinator Phil Booth said: ‘The two conditions that crop up in discussion - mental health and HIV/AIDS - are stigmatised conditions. It’s really complex because if you look at the top level and all the good that can be done then it’s a good thing. However on an individual level, some patients are actually still needing to be convinced to confirm their HIV status to their GP.’

But Dr Neil Bhatia, a GP in Yateley, Hampshire who launched the care-data.info site to inform the public about the scheme, said specifically excluded certain conditions while branding them as ‘sensitive’ could further add to existing stigma.

He said: ‘Some with those diagnoses, such as for example HIV, say that specifically excluding such diagnoses as “sensitive” further stigmatises those with the disease, and so such read codes should be uploaded. They absolutely should be telling people that the datasets will be expanded to include these items, but then they barely told people about care.data in the first place.’

An NHS England spokesperson said: ‘The care.data advisory group has agreed that it will look at methods for future scoping around inclusion of sensitive data, highlighted in the notes from the meeting in June. In the meantime there will not be any change to the original plans for the data extract.’

Care.data was delayed in February to build public understanding and will now be preceded by a pilot in 100-500 practices.

Information extracted to care.data can only be used for the ‘benefit of health and care’ after new legislation was enacted in the wake of revelations that records had been sold to insurance organisations.

Readers' comments (15)

  • This morning BBC reports that > 4mln Americans' health data has been hacked!
    With NHSE pushing towards privatization, the demand for extrication of more sensitive data becomes all the more unreasonable and even dangerous. The government loves - rather idolizes- the American health system, so you can expect this data to be hacked American-style in the very near future.

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  • The original care.data was always the thin end of the wedge to grab everyone's entire med record and make it widely available. Note the second part of Eve's proposal - " proposals for expanding the....... utility (e.g. who has access to the linked data)."

    I expect that the Information Commissioner will also remain as silent as he usually does.

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  • Surprise surprise.

    We all knew that there would be this kind of mission creep - we just didn't expect it so soon.

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  • Hadrian Moss

    Here we are then
    https://www.youtube.com/watch?v=RNJl9EEcsoE

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  • I am speaking as a patient rather than ex Practice Manager.

    We need to lose the word "stigmatised" this is nothing to do with stigmatising. Humans need to be treated with respect, privacy and dignity when accessing medical care.

    Having read this it just reinforces I was absolute correct to completely withdraw from NHS Care back in 2005.

    http://www.publications.parliament.uk/pa/cm200506/cmhansrd/vo050616/debtext/50616-35.htm

    If I cannot use NHS services in complete confidence then I am not going to attend at all or if I am in A&E situattion I would withhold information.

    This is absolutely appalling and nothing to do stigmatising. Its just basic human rights to respect, dignity and privacy.

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  • Thanks Dr Moss. Enjoyed my coffee with sprouts!

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  • If I have been to see my GP, I gave him/her info in confidence for the GP to use to treat me. for the Govt to think it is perfectly ok for it to grab that info that does not belong to it, and to sell it or make it available to anyone else. The NHS owns the record but the info on the record does not belong to the NHS or the Govt it belongs to me and was only given to the GP and only for the GP to use as appropriate.

    What is even more disgraceful and immoral is the lack of action to block this by those whose job it is supposed to be to protect us, e.g. the Info Commissioner.

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  • This comment has been moderated.

  • Another point is if you see a Consultant privately and the Consultant writes to your NHS GP that letter is NOT owned by the NHS. You paid for that consultation yet Kelsey and "care data" seem to think they own this data too and will hoover it up without patient consent.

    What is the ICO going to do to ensure consent is obtained for the use by the NHS of records that are private records not NHS ones?

    How will the ICO enforce this?

    Do we need to start saying to patients not let their Private Consultant write to their NHS GP or NHS Consultant?

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  • "Helen Wilkinson | Work for third sector | 19 August 2014 12:20pm
    What is the ICO going to do to ensure consent is obtained for the use by the NHS of records that are private records not NHS ones? "

    Sadly, recent history shows us the ICO will do nothing to protect the privacy of the British people versus the Govt. The ICO did not oppose the original care.data nor did he oppose its implied consent, worse still he put the legal onus on GPs, not the Govt, to inform the public with warnings that GPs were legally liable and not the Govt that had made the rule that the data had to be handed over!
    We can tell now that the ICO will not oppose the scheme.

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  • They have extracted the life out of most GPs so they might as well extract the life history out of our patients

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