Patients must be able 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 must be available where approved researchers can work securely on anonymised 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.
The National Data Guardian, Dr Nicola Byrne, welcomed the Government's decision as an essential step towards returning public trust to a steadier footing, saying:
“I commend this decision to delay the collection of GP data until the safeguards have been strengthened and people have been spoken with about the plans. Allowing time to do this well is absolutely the right thing to do. It is vital that data is used to improve health and social care through research and planning, but there is a risk of losing people’s support for this ambition if they feel decisions that affect them are being made without their knowledge. Transparency and respecting people’s choices are key, and the steps outlined in this letter provide a solid foundation for earning back trust in data sharing."
James is the Editor of Government Transformation magazine, and has been covering digital government and public sector reform for 20 years. He also oversees the development of the UK's biggest network of public sector transformation conferences.