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23.01.15

Requests to opt out of sharing medical records have been ignored

Thousands of requests to opt out of the health service’s system of sharing medical records have been ignored as NHS officials have admitted that not sharing data would affect patient care.

NHS guidelines released last year said that patients could, without affecting their care, “object to any information containing data that identifies you from leaving the secure environment … this includes information from all places you receive NHS care, such as hospitals”.

However the Guardian has seen a letter sent to MPs in which the chief executive of the Health and Social Care Information Centre (HSCIC), Kingsley Manning, admits that none of the of the objections registered by patients have been enacted.

According to Manning those patients who chose to opt out of the scheme may not have been aware that this would also result in them not being approached for direct care services, such as cancer screening.

Dr Sarah Wollaston MP, the Tory chair of the health select committee, told the Guardian that the letter had originally been sent as part of evidence to an inquiry into patient data but had not been made public.

She said MPs originally had been told that only 100 people were affected but: “This was a mistake. The figure is in fact much, much more than that. I have spoken to Kingsley about this and there will be a correction.”

She added that the opt out would have to be clarified before the roll-out of the much-delayed care.data scheme

According to campaigners, some GP practices had recorded 1,700 people opting out over fears that their confidential information might end up being used by insurers or pharmaceutical companies. However the exact number of people opting out is not known.

A spokesman for the HSCIC said that it had been advised there was “a flaw in the wording of the objection which creates an unintended consequence of preventing data flowing for direct care purposes such as cancer screening or electronic prescriptions”.

“The HSCIC is committed to contacting all the individuals who have laid an objection to ensure they fully understand the current implications of this objection and offering a solution which would not impact on their direct care.

“This is a hugely complex area and requires overall system solutions which are transparent to the public. We are committed to working closely with bodies including NHS England and the Department of Health, to create system-wide policies for consent and objections.”

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