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Patients to finally have data-sharing objections honoured

The Government has acted to ensure that patients who have opted out of their GP data being shared will now have their objections honoured, after Pulse’s revelations that potentially millions of opt-outs were being overridden.

Pulse revealed earlier this year that the Health and Social Care Information Centre (HSCIC) was forced to ignore patients’ objections to data being shared that were made before the calamitous roll-out of NHS England’s care.data initiative.

But this has recently been rectified, and GPs have been urged to accept the extraction of patient data-sharing opt outs. 

The GPC has asked practices to approve the voluntary collection request from the HSCIC ahead of the first extraction due in December, to ensure patients’ recorded objections can be implemented in January.

During the launch of care.data - which aims to link up GP records with data collected from other parts of the NHS for use by commissioners, researchers and private companies – GPs were asked to record patient opt outs.

However, it became clear that one of the options - which would prevent HSCIC from sharing the data with other NHS organisations - would have seen patients missing out on invitations to cancer screening.

This meant that the HSCIC has been forced to disregard these opt outs for almost two years.

Now, the GPC has asked practices to allow the extraction of data.

A GPC email alert states: ‘GPC strongly recommends practices participate in this collection to allow the HSCIC to uphold patient objections to their data being shared.’

A HSCIC spokesperson said: ‘The HSCIC has 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.’

Readers' comments (1)

  • Ask yourself. Can you trust the Government? Personally I will not be engaging with this. If they want the data they can take it but I will not comply.

    Time to fight back on all and every front.

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