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NHS information centre forced to write to potentially 'millions' of patients after care.data error

The NHS’s information centre will have to contact potentially millions of patients who have opted out of care.data informing them they will not receive services such as e-prescribing, bowel screening, e-referrals or e-pathology reporting when the scheme goes live.

In a letter submitted to the commons health committee, the Health and Social Care Information Centre explains that patients had been unaware that opting out of allowing HSCIC to share data meant they would not be contacted about screening programmes or be able to use services that require data sharing, such as e-prescribing.

As a result, it will have to contact patients to inform they must take as yet unspecified action if they want to receive these services and also opt out of the HSCIC sharing their data for purposes not directly related to their own care, but they will still be able to opt out of allowing their practice to share data at their GP practice.

The error was only identified by HSCIC after patients had been told that opt-outs would not have any effect on their care as part of a national campaign.

HSCIC does not know how many patients will be affected by this, and it will extract data from practices to find out this information before rolling out care.data. It said it would not speculate on the numbers of patients affected.

But a privacy watchdog group has reported that individual practices have recorded more than 1,000 patients opting out of HSCIC sharing data - which are called ‘type two’ objections - and the final figure could run into millions.

National data guardian Dame Fiona Caldicott told a Commons health committee hearing this week that more than 100 patients had already missed out on these services because they had opted out of care.data.

However, HSCIC refuted the ‘100 patient’ figure, explaining these patients had used a different opt-out that did not affect patient share, and it refuted the claim that patients had already been affected.

Its letter the health committee states: ‘We remain absolutely committed to dealing with patients and the public honestly and will be contacting all those members of the public who registered what was called a ‘type 2’ objection to their information flowing from the HSCIC.

‘This is because the code expression, as currently described in GP systems, would not allow HSCIC to disseminate personal confidential data to support direct care…. For example, a member of the public who has registered a ‘Type 2’ objection in its present form may not have understood that this will mean that as a result, they will not be approached for direct care services like e-prescribing, bowel screening, e-referrals or e-pathology reporting.

‘As there is no care.data extraction yet happening, none of the objections registered by patients, including ‘type 1’ objections, which prevent data flowing from the GP record to the HSCIC, have been enacted by the HSCIC.’

The privacy group medConfidential said that the numbers of patients affected could be in the millions.

It said: ‘Several GPs contacting medConfidential have each said that more than 1,000 patients in each of their practices have registered a type 2 opt-out. While there is no way to tell how representative these figures are, it suggests that hundreds of thousands and possibly more than a million patients have had their opt-out ignored.’

Phil Booth, coordinator of medConfidential, said: ‘This an error of monumental proportions. Hundreds of thousands of patients, maybe more, who believe they’ve opted out are having their choices ignored. So much for Jeremy Hunt’s promise that patient objections would be respected.’

The letter also explains that the 100 patients cited by Dame Fiona Caldicott during the evidence session with the committee were patients who submitted a ‘Preventing the Use of’ form, which prevents the HSCIC sharing patient data for secondary uses, but crucially does not impact on the direct care services prevented by the Type 2 opt out.

Pulse reported previously that, after being asked whether patients had opted out of direct care by opting out of care.data, Dame Fiona said: ‘As I understand it from [Kingsley Manning, chair of the HSCIC] in the case of type 2 objections [around information being distributed from HSCIC] which have already been lodged with GP practices… they found in the letter that there are just about 100 patients who had made that objection already.’

The care.data scheme was delayed after the GPC and RCGP raised concerns that the public were not sufficiently informed, and Pulse revealed one GP, Dr Gordon Gancz in Oxford, had his contract threatened for refusing to allow data extractions without patients’ express permission.

Before the delay, patients were given the option to prevent GP practices distributing their information and to prevent the Health and Social Care Information Centre distributing information.

This story was changed at 12:15 on 27 January 2015 to reflect that patients will not have to remove objections to their data being shared at HSCIC level, and that the HSCIC is looking at a potential solution to this problem

Readers' comments (9)

  • this is incredibly sinister.

    this story is being pushed by HSCIC to create fear.

    The rumour of a problem will cause many to toe the line

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  • omnishambles

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  • I wonder how many of these patients,who opted out and are now going to be denied screening, are GPs?

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  • Unbelievable. Worse than sinister, it's malicious even. Don't share your data then you will suffer!

    This comes under patient harm does it not? Who is the responsible clinician? There isn't one? Thought not.

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  • This comment has been moderated.

  • Perhaps if they were a little more open and compliant with the requirements of the subjects (patients, consumers, clients or whatever is the current term) then they may get cooperation, understanding and acceptance. But while "they know best" they may be thwarted.

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  • Vinci Ho

    Ha ha ha, what a f*****g mess. Highest incompetence to an unbelievable level.
    How can one still have trust on these people implementing this care.data scheme though its origin could be a noble one?
    Gandalf, you are a prophet........

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  • After so many examples in the public domain of where people's data has been mishandled / lost, my family and I chose not to have our personal medical confidential data shared with anyone for this very reason. This is yet another example of stupid incompetence which clearly demonstrates that no-one can be trusted to treat individual data with the respect it deserves.

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  • What has happened to the data protection act regarding who are the data controllers. Reading this article makes me very concerned about the 'stick 'approach being used to obtain data. As Data is a precious resource and choice should come into the equation

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  • The coding rules around data sharing are so complex, and there are so many different opt outs (summary care record, System One EDSM and care.data) I have completely lost track of which code exempts whom from what. The goalposts keep moving.

    We are drowning in bureaucracy and micor-management- have had a CQC inspection, and a PMS review meeting within 3 weeks of one another, and our CCG wants to do another qualitry review with a different scorecard they haven't even published yet.

    It's getting to the stage where I feel I am operating beyond the capacity of what can reasonably be expected from a human being, and I can't 'delegate' when 20% of my practice's core funding is being taken away. I worry a patient may come to harm, I really do.

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