New security plans for GP data collection programme

Patient data used for life-saving research will benefit from even greater protection and assurances owing to tougher safeguards that will be put in place ahead of the GP Data for Planning and Research programme commencing.

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.

In a letter to all GP’s, Minister for Primary Care and Health Promotion, Jo Churchill set out a new process for commencing data collection, moving away from a previously fixed date of 1 September. The letter makes 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.

Data collection will now only begin when the following criteria have been met: 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; and a campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices

Data informs planning and research across the health and social care sector saving lives through the creation of new treatments and diagnostics as well as allowing the NHS and Local Authorities to plan care and staffing levels in their areas.

Simon Bolton, Interim CEO of NHS Digital, 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.”