A large budget cut has put the rollout of mass GP data extraction – aimed to be shared for for planning and research purposes – into question.
The 2022/23 budget for the General Practice Data for Planning and Research (GPDPR) programme was reduced from £8.8m to £2.5m in September, NHS Digital board papers have revealed.
Data shared via GPDPR is intended to include patients’ full history, not just any future changes to their records. This means it goes even further than the previous controversial scheme, care.data – which was completely ditched in 2016 after becoming too toxic due to accusations of the NHS selling off the data to private companies.
However, following an indefinite delay following a backlash last year, NHS Digital has been working in the background on getting the programme off the ground.
But the work has taken a hit from the budget cut. With a year-to-date spend of £1.4m already, this has left just £1.1m for the second half of the financial year.
‘This budget would be insufficient to cover programme resources, delivery commitments and comms plans to meet the ministerial commitments for GPDPR to allow for the collection to take place,’ NHS Digital said.
The papers added that they were aiming ‘understand the rationale for the latest reduction’ and were seeking ‘a decision on the future of the programme’ from Government ministers.
By this month, NHS Digital aims to ‘gain approval for a new or updated business case’ for the current financial year, and a ‘plan confirmed for future years’.
GPDPR had originally been due to launch in September last year but was delayed due to data safety concerns.
A subsequent official review into data sharing recommended a solution whereby ‘one national organisation’ could ‘act as data controller for a copy of all NHS patients’ records’ in ‘a trusted research environment (TRE)’.
Last summer, ministers put the programme indefinitely on hold instead saying it would launch while a number of targets had been reached, including clearing the backlog of patient opt-outs.
And a progress report published in August said NHS Digital was moving to the ‘next stages’ of the rollout, including establishing the TRE and continuing engagement with GPs and the public.
A spokesperson for NHS Digital told Pulse: ‘The GPDPR programme aims to enable safe and secure access to de-identified patient data from GP systems, to support research and to allow the NHS to plan and deliver the right services.
‘In summer 2021, ministers made a series of commitments and the programme will not access GP data for planning or research purposes until it has been independently verified that we have met those commitments, which we continue to work towards. We are not working to a specific timescale and will not complete our work this financial year.
‘We have met the commitment to clear the backlog, NHS Digital’s Secure Data Environment (formerly known as the TRE) continues its development and we have worked with GPs and patients to shape proposals to improve the setting and application of opt-outs.
‘We have been engaging with patients, GPs and other stakeholders to understand any concerns and to baseline current understanding.’
What has to happen before GPDPR can launch?
In a letter sent to all GPs in July 2021, then health minister Jo 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.