Every time patients use the NHS, there’s an opportunity to learn a bit more about the nation’s health and about the NHS services we provide. By safely and securely collecting and analysing this information across all patients, we could build up a detailed picture which will help us to research new treatments, deliver the right services and improve the NHS.
The use of patient data for planning and research has the power to transform our understanding of what causes ill health and, importantly, what we can do to prevent or treat it and provide better care. We already use data from hospitals in this way to support research and planning.
While the benefits are well understood, using GP data for planning and research is a sensitive area. It is crucial that patients and the public understand how health data is used and that they have choices about the way their data is used, and we must be transparent about the safeguards we have put in place to keep data safe.
When the GP Data for Planning and Research (GPDPR) programme launched in spring 2021, it was met with concern from some patients, public and professionals about what security and controls on access to data would be put in place. This concern prompted a redesign of the programme to address the issues raised and to meet the conditions subsequently set out in a letter to GPs from Jo Churchill MP, the then Parliamentary Under Secretary of State for Primary Care and Health Promotion.
We have organised ourselves around three key areas of work:
1. Communications and engagement
This workstream is focused on making sure we have an ongoing conversation with stakeholders and the public about patient data and to ensure that we learn from feedback and use it to shape our approach at each stage.
2. Data management, access and governance
This team is working on the Trusted Research Environment and other aspects of the programme that focus on how data is processed, accessed and kept secure.
The programme must meet the commitment to reduce the burden of Type 1 opt-outs on GPs and practice staff. This workstream is engaging with the profession to identify ways to achieve this, while also providing a good customer experience for anyone who chooses to apply a Type 1 opt-out.
We are absolutely committed to improving the use of GP data for planning and research in an open, transparent, and inclusive way. The voice of the public, GPs and other stakeholders is being used to shape how we progress at every stage.
We will only move toward data collection when we are confident that we have met all the terms in the minister’s letter.
This report summarises the activity undertaken as part of our Listening Phase. Although we have reached the end of this phase we will continue to listen to views from across our many and varied stakeholders.