Plans to increase patient protection under new GP data collection programme

Patient data used for research will be better protected under new safeguarding plans ahead of the GP Data for Planning and Research programme

Patient data will no longer be collected from the 1st of September as Minister for Primary Care and Health Promotion Jo Churchill sets out a new process offering more protection and security.

Data collection criteria

Data collection will now only begin when the following criteria have been met:

• The ability for patients to opt-out or back into sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded, and outstanding opt outs being processed.
• 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.

Patient data is not for sale

In the letter to all GP’s, it has been made clear that patient data is not and never will be for sale and that it will only ever be used to deliver clear benefits to health and care, by organisations that have a legal basis and legitimate need.

NHS Digital Interim CEO, 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.”