Every time patients come into contact with the NHS, we could learn a little 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.
You don’t need to look far to see the benefits of this in practice; the pandemic has shown us just how critical this data is, enabling us to identify and protect the most vulnerable.
The benefits extend beyond this, of course, and you can read more about some of them in this blog by Dr Marion Mafham, NHS consultant kidney specialist and researcher at the University of Oxford.
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 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.
We have reflected on the feedback and strengthened our governance and decision-making processes.
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. Such was the level of concern, it 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.
I’m mindful that, while we’ve been working hard with a range of key stakeholders to redesign the programme, we have been doing this quietly and behind the scenes. I want to take this opportunity to explain some of the things that have been happening and how we intend to share our thinking as we progress.
It has taken some time for us to work through the practicalities of meeting the minister’s commitments. We have reflected on the feedback and strengthened our governance and decision-making processes. We have also organised ourselves around 3 key areas of work:
1. Communications
This workstream is focused on making sure we have an ongoing conversation with stakeholders and the public about patient data and ensure we learn from feedback and use it to shape our approach.
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.
3. Opt-outs
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 have also set up 3 external assurance groups to act as ‘critical friends’ and to check our thinking as we work:
- the Information Governance Expert Liaison Group gives us independent advice about information governance and legal issues
- the Patient, Public Engagement and Communications Advisory Panel gives a patient and public perspective
- the Check and Challenge Assurance Group is made up of experts who are able to scrutinise our ideas and plans as they develop.
The action notes from the assurance group meetings are published on the assurance group pages on the website, allowing all stakeholders to keep track of the conversations taking place, and we will also be posting regular blogs from different members of the team to give an overview of our activities.
Earlier this year, we published updated information on our website acknowledging the challenges and outlining how the programme will be progressing. We’ll be keeping this information up-to-date as we progress.
Changing landscapes
While the programme has been redesigned, the circumstances surrounding the programme have also changed. This has raised some questions, which we are still working through. The main issues that have affected our approach are:
- the announced merger of NHS Digital into NHS England in 2023 – while this organisational change doesn’t change the aims of the programme, it does require us to clarify and understand the processes around how the data will be managed. This detailed work is being carried out for both organisations by legal and information governance teams and we are staying closely involved as it progresses
- the NHS Data Strategy. The strategy will define priorities and policies in this area and may affect the way that the GPDPR programme is delivered. We remain in close contact with the team developing the strategy, so we can iterate and change our approach as required. This may affect some of the work on opt-outs and the final design for the Trusted Research Environments
We’ll work publicly and with our assurance groups as we develop our thinking, and we’ll keep on communicating as we progress.
What next?
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 and stakeholders will be 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. We paused our public engagement while we worked out the proper programme approach, but I hope we are now going to see a lively conversation and debate in this vital area. We look forward to working with you.
