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NHS England invites patients to opt-out of GP record sharing for research

NHS England is set to invite patients to opt-out of GP record sharing for research purposes from June.

The six-week public campaign will initially focus on the new data protection regulation that came into effect on May 25, with a ‘national data opt-out’ scheme to start in early June.

The scheme will offer patients a choice on whether their confidential patient information is used for research and planning purposes.

RCGP chair Professor Helen Stokes-Lampard said GP patient data ‘is an incredibly rich source of intelligence that can inform high-quality medical research, and help with planning NHS services, both of which can ultimately benefit patient care’.

She added: ‘But patients must be comfortable with their data being used in this way, and confident that it will be used appropriately.’

Dr John Chisholm, BMA medical ethics committee chair, said: ‘While appropriate and effective data sharing is extremely important so that improvements can be made to healthcare services, it is important that patients are able to control what is done with their confidential information held by the NHS.

He added that the BMA supports the opt-out scheme ‘but is glad that patients will still be able to register the previous ‘type-1’ model, which stops identifiable data being shared outside their GP practice for purposes other than direct care, until 2020’.

He said: ‘We also welcome the government’s additional commitment to implement a system by which GP-held data is de-identified before leaving the practice by September 2019.’

The Department of Health and Social Care set out its plans for data-sharing last year, outlining a system for anoymising and extracting data from GP practices.

Dr Simon Eccles, chief clinical information officer for health and care, said: ‘This campaign will highlight to the public how the health and care system uses their data, safely and securely, to improve the care they receive, plan services and research new treatments and to tell the public ‘their data matters to the NHS’.’

This comes after NHS England announced earlier this week that GPs in three areas of England will be expected to share patient data with social care as well as hospitals in the next two years.