GP data collection scheme pushed back further after backlash

The controversial mass collection of patient data will be delayed further, the Government has said in a letter to all GP practices.

The General Practice Data for Planning and Research (GPDPR) scheme was due to commence on 1 September after being pushed back amid campaigners’ warnings it would make sensitive patient data available to private firms.  

But health minister Jo Churchill said the new start date had now also been scrapped and that data would now only be gathered once three tests had been met.

She insisted the latest delay would ensure patients were given greater powers to opt in and out of the scheme.

In a letter sent to all GPs, Ms Churchill set out the three-point criteria under which data collection can commence:

• The ability for patients to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded.
• 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 amongst trusted researchers to further benefit patients.  
• A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices.

NHS Digital insisted protecting privacy and security of patient data had always been at the core of the delayed GPDPR programme.

It said it had listened to feedback on proposals and was determined to continue working with the sector on key elements to inform further safeguards, reduce the bureaucratic burden on GPs and step-up communications for GPs and the public ahead of confirming a new implementation date.

NHS Digital interim CEO Simon Bolton said: ‘Patient data is vital to healthcare planning and research. It is being used to develop treatments for cancer, diabetes, long COVID and heart disease, and to plan how NHS services recover from COVID-19.

‘This research and planning is only as good as the data it is based upon. We know we need to take people with us on this mission and this decision demonstrates our absolute commitment to do just that.

‘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.”

The RCGP and BMA, which had called for the scheme to be delayed,  issued a joint statement welcoming the commitments set out in the latest plans.

They said: ‘We have always recognised the crucial role that GP data has to play in research and planning which can improve public health but have made it clear that it is important for patients and the public that this data is only made available for appropriate purposes, and in a secure and trusted manner.

‘We are encouraged by the plans outlined today which will allow more time for improvements to be made to the GPDPR programme and to build understanding and trust amongst the public and the healthcare system. In today’s letter, the Secretary of State commits to ensuring data collection will only begin once important conditions have been met.

‘We have consistently called for greater and improved communications and engagement around the programme, as well as for a number of improvements to the programme itself.’

GP privacy campaigners warned in May that the automatic extractions of data from GP-held patient records, that had been due to come into force in early summer, were ‘far bigger’ and ‘more intrusive’ than care.data.

The scheme had caused a headache for GPs, who were single-handedly left to inform patients of the scheme on a tight deadline amid a lack of public information from the Government.

A version of this article previously appeared on our sister title Pulse