National Data Guardian statement on General Practice Data for Planning and Research programme

Jo Churchill, Parliamentary under Secretary of State for Primary Care and Health Promotion, wrote to GPs yesterday confirming the Government’s plan to delay the implementation of the General Practice Data for Planning and Research programme (GPDPR) until three key conditions had 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
  • 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, welcomes the 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. What is now needed is careful engagement with both the public and the profession to address their concerns and provide a clear presentation of the facts, including the benefits and risks of data sharing, the safeguards in place to protect people’s data (including who can access it for what purposes), and what choices people have in regard to it.

I will be providing independent oversight as a member of the group advising on next steps for the programme. A member of my panel will also be sitting on the group convened to focus on engagement. Through these mechanisms, I will continue to represent the interests of the public, so that there are no more surprises for them around the plans for their GP data.”

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