NHS Digital has told practices that a new programme to extract data from GP IT systems will begin from 1 July. The General Practice Data for Planning and Research (GPDPR) service will replace the General Practice Extraction Service (GPES) system that has been in place for the past decade.
The overhaul will mean that from 1 July NHS Digital will extract a broad range of patient data from practice systems - including 'data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health; data on sex, ethnicity and sexual orientation; data about staff who have treated patients'.
Campaigners say the extraction amounts to taking 'almost all the coded data from your patient record' - and have raised concerns that patients may not have been adequately informed about the plans.
GP patient data
Practices have been told they will need to enable the data extraction in their IT systems from 23 June - but at least three dozen GP practices in London have agreed to block it, and many more could follow suit.
Dr Osman Bhatti, a London GP and chief clinical information officer for North East London CCG, said all 36 practices in the Tower Hamlets GP Federation had agreed they would not enable data sharing from 23 June.
In an open letter urging other practices to pause before allowing the data sharing to go ahead, Dr Bhatti wrote that NHS Digital had 'not publicised this in the way that I would have expected'.
He added: 'If you feel that you have not had enough time to inform your patients and that they have had a reasonable time to object, then this sharing agreement should not be enabled. The expectation is that this will be enabled by 23 June 2021 for extraction to commence from 1 July 2021.
'This would technically place the GP practice as the data controller in breach of the Health and Social Care Act 2012 but there are no sanctions or penalties within the Act that arise from failure to enable. What may happen however, is that NHS Digital will contact the practice to enquire as to why it has not been enabled. This inaction has been discussed with, and supported by Londonwide LMCs.'
NHS Digital has said the GPDPR will reduce workload for GP practices and make more data available 'to support a wide variety of research and analysis to help run and improve health and care services'.
An NHS Digital spokesperson said: 'Patient data is already used every day to plan and improve healthcare services, for research that results in better treatments, and to save lives.
'We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data.
'We have worked with our partners in the GP profession throughout as we developed this improved data collection and will continue to do so.'
RCGP chair Professor Martin Marshall said: 'The college supports the principle of improved sharing of data for important healthcare planning and research, but it is critical that this is transparent and that patients have confidence and trust in how the NHS and other bodies might use their information.
'Along with the BMA, we have engaged with the planning of this new data collection – which is a legal requirement of GP practices – for several years and are continuing to lobby NHS Digital to ensure appropriate safeguards are in place for how the data collected is used.
'The job of informing the public must not be left to busy GPs, especially at a time of extreme workload pressures and focus on the COVID-19 vaccination programme, so we have written to NHS Digital urging them to undertake greater communications with the public about this new collection and their options for opting out.'