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NHS data grab delayed beyond 1 September

by Jess Hacker
21 July 2021

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NHS Digital will no longer collect patient data from 1 September, and has removed the fixed date in favour of a three-point criteria, the organisation has said.

Health minister Jo Churchill said yesterday (19 July) that this latest delay to the General Practice Data for Planning and Research (GPDPR) scheme would grant patients more power to opt in or out of the programme.

This is the second time the data grab has been postponed. It was first announced in May that it would be launched on 1 July, but the Government said in early June it would push the mass extraction back to 1 September.

Originally, patients were given a small window of only a few weeks to opt out by a 23 June deadline: a move which was criticised for its failure to ‘transparently and actively’ communicate this with the public.

Other criticism from campaigners suggested it would make sensitive patient data available to private firms. 

In a letter sent to all GPs, Ms Churchill confirmed that the data grab will now only go ahead with the following conditions met:

  • The ability for patients to opt out or back in to the scheme, with already uploaded data being deleted and outstanding opt outs processed
  • A Trusted Research Environment is available where approved researchers can work securely on de-identified patient data which does not leave the environment, offering further protections and privacy while enabling collaboration among trusted researchers to further benefit patients
  • A public engagement campaign to increase awareness of the scheme, explaining how the data is used and patient choices

Protecting privacy and security of patient data has been at the core of the programme, NHS Digital said, adding that it has listened to feedback on proposals.

NHS Digital said the letter makes clear that ‘patient data is not and never will be for sale’, and that it will only be used to deliver ‘clear benefits to health and care’ by organisations that have a legal basis and legitimate need to use the data.

Simon Bolton, interim chief executive, said: ‘We will continue to work with patients, clinicians, researchers and charities to further improve the programme with patient choice, privacy, security and transparency at its heart.’

‘Comprehensive and well-communicated’ programme needed

Responding to the delay, the BMA said it was ‘relieved that there will now be time to ensure the final programme is comprehensive, considered and well-communicated’.

Dr Farah Jameel, BMA GP committee executive team member, said the new commitments now grant NHS Digital enough time to put together a wide-ranging communications campaign for the public.

‘We also await details of how the proposed criteria for when the scheme will get underway will be measured, along with timescales,’ she added.

The RCGP also released a joint statement with the BMA, outlining the organisations are ‘encouraged’ by the new plans which will allow more time to build understanding and trust among the public and the healthcare system.

This story was initially published on our sister title Healthcare Leader.