The government has delayed its NHS patient data sharing project and tightened the rules of operation after triggering a major national outcry earlier this year.
NHS Digital, which is managing the collection of GP data from all patients in England unless they have opted out, announced the changes today in a letter to GPs following a consultation period.
It revealed patient data will no longer be collected on 1 September and will only be done once three tests have been met. They are:
- 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.
- Creating a trusted research environment where approved researchers can work securely on de-identified patient data which does not leave the environment.
- A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices.
Secure research environment
NHS Digital said it believed the secure research environment would offer further protections and privacy while enabling collaboration among trusted researchers to further benefit patients.
Doctors representative groups the British Medical Association (BMA) and Royal College of GPs (RCGP) will be given oversight of the research environment along with the National Data Guardian.
“This is so both GPs and the public can have a high degree of confidence that their data will be safe, and their privacy protected,” NHS Digital said.
It added: “Protecting privacy and security of patient data has been at the core of the programme.
“NHS Digital has listened to feedback on proposals, and is 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.”
The organisation also said its letter to GPs makes it clear that patient data is not and never will be for sale.
“Data will only ever be used to deliver clear benefits to health and care, by organisations that have a legal basis and legitimate need to use the data,” it said.
Work is also continuing to explore a way of centralising the one of the opt-out processes to remove the burden from GPs and make it easier for patients to exercise this choice.
‘We need to take people with us’
NHS Digital interim CEO Simon Bolton emphasised that patient data was 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,” he said.
“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.”
