Last month, the government announced it would delay plans for a major extraction of patient data - the General Practice Data for Planning and Research (GPDPR) programme - until 1 September 2021, giving practices more time to communicate the changes to patients.
The move followed concerns from GPs that NHS Digital had ‘not transparently and actively engaged the public’, while dozens of practices warned that they would block the extraction of data if it went ahead.
But in a letter to GPs on 20 July, health minister Jo Churchill outlined a new process for starting the collection of patient data. No 'specific start date' for launching the data collection has been set, and the government has set four key tests it says must be met for the work to resume.
Before any data is collected, the government has committed to ensuring that patients have the ability to opt out at any point.
The government has also said it will ensure a 'backlog of opt-outs' by patients has been fully cleared before data extraction starts, while a 'trusted research environment' will be developed and patients will be made 'more aware of the scheme through a campaign of engagement and communication'.
BMA and RCGP leaders have said that the delay will ‘allow more time for improvements’ and help to ‘build understanding and trust among the public and the healthcare system’.
In the letter to GPs, the government makes clear that, if patients choose to opt out after previously agreeing to share their information, all data collected under the programme will be deleted.
It also states that the government continues to explore ways of centralising the GP data Type 1 opt-out process, which would take this responsibility away from GPs and make it easier for patients to back out.
Commenting on the plans to delay the programme, NHS Digital interim chief executive 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 BMA and RCGP said in a joint statement: '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.
‘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.
‘These improvements include the need to simplify Type 1 opt-out processes, ensure the right to deletion of data that has been collected by NHS Digital prior to a type 1 opt-out being registered, and to ensure the security of data collected, by committing not to disseminate data but instead exclusively making data available via a trusted research environment.
‘It is positive to see that key points have been acknowledged and addressed in the latest plans. We will continue to work closely with the government, NHSX and NHS Digital to ensure that these plans are delivered appropriately and to represent the views of our members as the programme develops.’