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Update: Care.data put on hold

As NHS England delays the data-sharing scheme to ‘build understanding’, Nigel Praities looks at what went wrong

‘Better information means better care,’ says the leaflet that was meant to be delivered to all addresses in England to explain the care.data scheme.

But this small bit of paper has ignited an almighty row over consent, confidentiality and who actually owns patient records, subjecting the Government’s flagship data-sharing scheme to intense scrutiny.

Now NHS England has announced it is shelving the scheme for six months, postponing the planned extraction of data from GP surgeries from April until the autumn.

The delay comes amid rising public concern. In the days before NHS England’s announcement, both the RCGP and the GPC withdrew their support for the project, warning that ‘large numbers’ of patients had not yet received any information and calling for the publicity campaign to be expanded.

Care.data will see data from patient records extracted from all GP practices, linked to secondary care data, shared across the NHS and in time made accessible to researchers and even private companies. Supporters argue it will have significant benefits for both commissioning services and medical research, but there have been major concerns about the leafleting campaign, with critics arguing that it glossed over the potential drawbacks of taking part in the scheme and should have made opting out easier.

A poll of 860 adults in England commissioned by the BBC found that two-thirds of people did not remember receiving a leaflet, while some 45% of respondents said they still did not understand the scheme.

NHS England has said it is urgently looking into these claims, but Royal Mail says it has fulfilled its contract.

Tim Kelsey, national director for patients and information at NHS England, said: ‘We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object.’

NHS England also said it would work with patients and professional groups – including the BMA, RCGP and Healthwatch – ‘to promote awareness with patients’.

The RCGP has suggested that individually addressed letters should be sent out about the scheme and it should be advertised on TV and radio.

RCGP honorary secretary Professor Nigel Mathers said: ‘The extra time will provide [NHS England] with the chance to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people’s data.’

How the care.data controversy unfolded

2013

March

The Health and Social Care Information Centre announces plans for care.data to join up GP and hospital records.

• April

NHS England admits there is a risk that patients will be identified through care.data.

Jeremy Hunt announces patients will have ‘veto’ over their data being shared.

• May

NHS England announces pilots of care.data will take place.

• August

Private companies are set to gain access to data for as little as £1, it emerges.

NHS England rules out a national publicity campaign for care.data.

• September

GPC warns GPs that they are unable to object to patient records being shared under care.data.

• October

NHS England delays care.data extractions and announces a £2m publicity campaign after pressure.

• November

Pulse reveals that two GPs have taken the ‘unlawful’ decision to opt all their patients out of care.data.

2014

• January

Information Commissioner’s Office says GPs will be held responsible for patient complaints over care.data.

Pulse survey reveals more than 40% of GPs intend to opt themselves out of care.data.

Leaflets explaining care.data are sent to homes across England.

• February

Pulse reveals that independent experts overseeing care.data have approved 31 releases of other identifiable patient data since April.

Oxford GP Dr Gordon Gancz is hit with a contract notice over his plan to opt all of his patients out of the scheme.

NHS England delays care.data after objections from both the GPC and the RCGP.

Pulse survey reveals three out of four GPs believe care.data should be ‘opt in’.

Readers' comments (6)

  • Sharing data does / should not including identifying data, e.g. date of birth, NHS number and postcode, what has this information got to do with health care?

    Anyone with that information can identify me!

    No matter what is put in place now, no matter how great the guarantee, I wouldn't trust anything I hear from BHS England and am very careful indeed as to what information I give my GP.
    Every patient had a tremendous amount of trust in their GP, probably the most trusted professional group, being bullied into handing out confidential information via the 'back door' has been damaging. We are repeatedly told the NHS belongs to patients, so do medical records, using patient confidential information is theft and a breach of the DPA.

    I work with lots of folk and cannot find anyone that has had any information re this thieving scheme, but whatever happens no, the damage has been done and the NHS has lost the trust of the patidents it is paid to serve.

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  • The more you look into this mess the worse it gets:
    This article quotes a speech by Jeremy Hunt on 2nd March: http://www.ehi.co.uk/news/ehi/9205/nhs-will-be-dependent-on-ehrs----hunt
    "Hunt said that when care.data information is linked with the sequencing of human genomes, “we are going to get into a whole new world when it comes to understanding disease”. This will pose problems for politicians when working out what to fund, but “will be fantastic for humanity."
    A great illustration of the 2 faces of care.data, potential massive force for good (genetic links to disease) potentially disastrous for privacy (its the government's answer to not getting its way with ID cards - now they can have all our data PLUS our DNA - there's nowhere to hide!)
    Ben Goldacre has likened care.data to nuclear power, to be handled with great care, in fact the best possible care. Yet ….
    HSCIC doesn't even have a code of practice in place.
    I as a GP did NOT get a notification of what I was to tell my patients about care.data.
    The failings of the distribution and content of the leaflet are well known.
    The Information Commissioner had to warn HSCIC in February that there would be legal ramifications if they went ahead and the public had not been properly informed. This is not just careLESS its downright cavalier at best, subterfuge at worst.
    Then just to cap it all the HSCIC, at the parliamentary select committee was unable to tell MPs how data from 47m hospital records data was released to insurance companies, stating it was 'a mistake' by their 'predecessor organisation' and there were no records left from that organisation (the NHS IC) of why or how it happened, when the HSCIC logo was on the memorandum of understanding between whoever gave this data away (for a paltry £2,200) and the Insurer's body. (Laughably, the HSCIC website says they are the 'trusted' holders of data). I'm sorry I just don't believe them, I don't think it was a mistake, I think they know perfectly well how it happened.
    And could somebody explain to me why they have decided to make their Director of Public Assurance redundant and not replace him, just at the very moment when Public Assurance is so desperately needed? http://www.theguardian.com/politics/2014/feb/10/mark-davies-chairman-health-social-care-information-centre-to-depart

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  • Vinci Ho

    I stick to one simple question to the authority , hierarchy and government :
    ' Have people got the right not to believe and trust what you said and pushed forward?'
    FREEDOM of NOT TO BELIEVE(FNTB),ladies and gentleman.

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  • Interesting read. Apparently the leaflet was not delivered to all households according to this news.

    http://www.theregister.co.uk/2014/02/24/nhs_england_care_data_leaflet_not_important_enough_exceptional_circumstances_tag/
    See this link for the FOI information request reply from Royal mail.
    https://www.whatdotheyknow.com/request/royal_mail_contract_for_caredata#incoming-484935#
    Can PULSE magazine ask for FOI request confirming that the care.data was NOT delivered to houses which opted out of leaflet drops?

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  • The problem is the lack of publicity, no information available through the media & TV, to inform patients of what the care.data system was all about. The mail shot was rubbish, most of our patients threw the leaflet away as it was posted in and amongst other local take away adverts!!! It was also compounded by the fact that everyone was opted in, and were expected to opt out of something they knew nothing about. The eventual TV coverage sent everyone into panic mode - and patients are frantically now opting out in case their details are sold to all and sundry. Clarity from the outset was all that was needed - patients need to be fully informed. Now the suspicion has set in, patients will be difficult to win over.

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  • Patients should not have to opt out of any scheme. Being able to opt in respects people's autonomy. Having to opt out is Big Brother tactics.
    As for the information leaflet - when will those in authority realise that withholding detail on risk/harm/negatives (eg screening, health checks etc) instead of being completely unbiased and open displays contempt, destroys trust - and backfires.

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