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700,000 patients continue to have data sharing objections ignored



Patients who had opted out to having their GP data shared back in 2013 are continuing to have their objections ignored, despite assurances from the NHS that they would be honoured by January 2016.

A spokesperson for the Health and Social Care Information told Pulse that it had been unable to rectify the situation which saw 700,000 patients’ objections to their data being shared across the NHS ignored.

This is despite pledging to sort out the problems by January this year.

Pulse revealed last year that HSCIC had been forced to ignore patients’ objections – many made during the aborted launch of NHS England’s flagship record sharing drive, care.data – because acting on them would have prevented patients receiving invitations to life-saving screening programmes.

It told Pulse in November that it had ’developed a system which will allow us to uphold the… opt-out that patients have registered to the HSCIC sharing their identifiable data for purposes other than their direct care. It will be operational by January 2016.’

But this week they have told Pulse that they had not yet implemented the objections.

A spokesperson said that a review into consent and opt-outs, to be published by Dame Fiona Caldicott, is to be published ‘soon’.

They added: ’HSCIC will implement the outstanding Type 2 objections in due course.’

The HSCIC told MPs in January 2015 – almost a year after NHS England paused care.data days before it was due to launch – that they would have to write to potentially millions of patients to explain that their information had continued to be shared.

In May, Pulse revealed HSCIC estimates had identified 700,000 who had registered a ‘Type 2’ objection to care.data, which was intended to prevent data being sent from the HSCIC to third parties such as commissioners and researchers.