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HSCIC to commence patient data sharing opt outs this month

Neil Merrett Published 20 April 2016

'Type 2' objections received since 2014 to sharing of data will now be honoured; Caldicott findings delayed until after EU referendum with public consultation to follow


Privacy campaigners have welcomed commitments from health secretary Jeremy Hunt to begin honouring the requests of over a million patients who have opted out of sharing personal information for purposes other than direct care as a "necessary first step" to address wider data governance concerns.

The opt outs, identified as a 'type 2' objection, prevent identifiable information being shared by The Health and Social Care Information Centre (HSCIC) - the national provider of information, data and IT systems - for purposes other than direct care.

An estimated 1.2m opt outs have been received from GP surgeries since 2013, but are yet to have been enacted.

This opt opt process will now start from April 29 based on commitments made by health secretary Jeremy Hunt to the Information Commissioner's Office (ICO), which has previously criticised the HSCIC for breaching the Data Protection Act by continuing to share information after receiving the objections.

"The opt-outs will be applied where data is released to support non-direct care, such as research into cancer treatments," said HSCIC in a statement concerning the objections.

HSCIC is to be rebranded as NHS Digital from July this year.

An estimated 2.2% of the 56m patients NHS England is responsible for have so far issued type 2 objections regarding sharing of their personal data. HSCIC noted that after April 29, future opt outs are expected to be implemented within a period of 21 days or earlier where possible.

Rather than representing a "radical step forward" with regards to personal data sharing in the NHS, the Medconfidential campaign group said new commitments to process the type 2 opt outs were finally fulfilling promises made to patients dating back several years.

While welcoming the latest commitments, Medconfidential coordinator Phil Booth noted that questions still remained over the future direction of NHS England's information sharing initiatives such as the delayed project that was originally scheduled to go live back in 2014.

The programme is a national initiative which hopes to eventually use anonymised patient data extracted from their GP and hospital medical records to inform care.

Concerns have also been raised by the group over the findings of a review of security and consent standards for patient information sharing across the NHS involving national data guardian Dame Fiona Caldicott that would impact programmes like

"Now patient wishes have been implemented, this should begin to reassure patients that the corner has been turned," Booth said.

"It remains to be seen whether the politicians' decisions will spring new surprises when defining what being Caldicott compliant will mean."

However, in a separate announcement today at e-Health week, the Department of Health confirmed that the publication of the review' findings, originally expected around February this year, was being delayed until after the upcoming EU referendum vote scheduled for June 23.

A spokesperson confirmed that a consultation period would be launched before the likely implementation of any changes to patient data sharing. However, discussions between stakeholders such as Dame Caldicott may continue over this period.

Related articles:

HSCIC gets an NHS Digital makeover

NHS patient data standards review expected in February

HSCIC to commence patient data opt outs from January

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