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Two-thirds of public 'don't recall receiving care.data information leaflet'

Two-thirds of patients do not recall receiving a leaflet informing them about NHS England’s flagship care.data record sharing scheme, according to a BBC poll of 860 English adults.

NHS England ran a nationwide campaign involving a mail drop to every English household last month, but the poll commissioned by the BBC - run after the mail drop - reveals that concerns the leaflet would be seen as junk mail and discarded seem to have been borne out, with 71% saying they did not remember receiving a leaflet.

The survey also found that the overall message does not appear to be getting through to the general public. Some 45% of respondents said they still do not understand the scheme, with the first data extractions due to take place in March.

The lack of knowledge across the patient population could have repercussions for GPs themselves as the Information Commissioner’s Office has said that under the ‘fair processing requirements’ of the Data Protection Act, practitioners have a duty to ‘actively provid(e) information to patients so they are well informed about the process’ while if a patient complains they weren’t informed about the process ‘it’s the GP’s responsibility’.

The ICO’s strategic liaison group manager, Dawn Monaghan, said the ICO was ‘continuing to liaise with both NHS England and the Health and Social Care Information Centre about our concerns in regard to the detailed communication they are providing for GP’s and patients’.

A Pulse survey of nearly 400 GPs has shown that over 40% intend to opt themselves out of the scheme over a lack of confidence in how data will be shared, and some GPs have gone further by opting all of their patients out of the scheme in defiance of NHS England guidelines.

Dr Paul Thornton, a GP in Nuneaton, Warwickshire told Pulse that the lack of patient knowledge showed NHS England campaign had failed and that GPs were going to be forced to provide additional information.

He said: ‘The obligation on GPs to fulfil the fair processing requirements has not been fulfilled by the Government’s leaflet drop.’

‘I see no reason why GPs should not invoice the HSCIC for the time it takes to undertake the legal requirements that they must fulfil.’

A spokesperson for NHS England said: ‘This is an ongoing exercise of engagement. We are listening to people’s concerns and are actively talking with doctor’s groups, patients and charities about how we can better and further explain this programme and people’s rights to object.’

‘Care.Data is a really important programme and the information it provides will ensure the highest standards of care and clinical safety are consistently met throughout the NHS and alert us to where standards drop, enabling us to take prompt action.’

Readers' comments (21)

  • Vinci Ho

    ' Ignorance is strength'???(1984)

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  • This is not just about patients not recognising the importance of the leaflet. I can assure you that my husband and I would not have missed it.....we DID NOT receive one.

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  • So who would be to blame if no leaflet was received ?.who is actually delivering the leaflets door to door? ie which company? Are they liable in any way if no leaflets are delivered? Bet they wouldn't like to think so. How would a household prove no leaflet was delivered.?maybe they could do a house to house enquiry? Next question.What if one prson in the household decides to opt in and others to opt out out........the opt ins would trump the opt outs obviously so what legal action could they take for breach of privacy? presumably.... the sort of information that links them would be gathered anyway against their wishes eg genetic info/childrens' info........this is a mess of a proposal whichever way it is looked at - what a shame when so many citizens have such altruistic values but are not going to tolerate being duped in such a dishonest manner. Wonder which committee thought it up in the first place? Does Anybody know?

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  • From the Telegraph:

    The risk assessment emerged after NHS statistics, revealed over the weekend, showed that health services were losing or breaching the safety of 2,000 patient records every day. More than 2 million serious data breaches by the NHS have been logged since the start of 2011

    'But the risk assessment by NHS England, the body behind the scheme, warns that patients could be “re-identified” if database data is combined with other information.

    It says: “While there is a privacy risk that the analysts granted access to these pseudonymised flows could potentially re-identify patients maliciously by combining the pseudonymised data with other available datasets (a technique known as a jigsaw attack) such an attack would be illegal and would be subject to sanction by the Information Commissioner’s Office.”

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  • I have no objection to my medical history being available to healthcare professionals. Indeed, if I were to need emergency treatment, I would prefer the doctor, dentist, etc. to have access to my history.
    But I would like to check it for accuracy and completeness. I have seen no guidance on whether I can do this and how to set about it.

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  • I can absolutely say that no leaflet about the care.data record sharing scheme has been delivered to my home. But it is impossible to prove a negative!

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  • there are obvious advantages to having ready access to accurate concise medical records but will they be accurate and safe in central hands. I do not want profit movtivated private enterprise like Serco and the big multi national pharmaceutical companies having paid access to private information to be used for profit.

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  • Definitely not received the leaflet.

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  • Our household definitely hasn't received one either.

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  • Our household has definitely not received one either!

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