NHS Digital’s Programme Head for GP Data, Eva Simmonds, discusses the benefits and challenges of health data sharing and looks to the future for the GP Data for Planning and Research programme
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 is crucial to research new treatments, deliver the right services and improve the NHS.
The use of patient data, to both help plan the right public health and NHS services and to drive clinical 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.
It also helps local NHS bodies to plan their services effectively, becoming far more responsive to the needs of the patients they serve.
The benefits extend beyond these, of course, as Dr Marion Mafham, NHS consultant kidney specialist and researcher at the University of Oxford, wrote in her piece last year. However, while the benefits are well understood, using GP data for uses beyond an individual patient’s care 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. And so, having reflected on the feedback, we have strengthened our governance and decision-making processes in response.
Three main priorities for primary care data sharing
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.
We’ve been working hard with a range of key stakeholders to redesign the programme since then. However, a lot of this work takes place behind the scenes and so it isn’t immediately obvious to the public, how far we have come.
It has taken some time for us to work through the practicalities of meeting the minister’s commitments. We reflected on the feedback and strengthened our governance and decision-making processes, organising ourselves around three key areas of work.
Our first key area is communications. We made sure we developed an ongoing conversation with both stakeholders and the public about patient data that continues to this day. We learn from the feedback we gain from this and use it to shape our approach.
We’ve also been working hard to address the concerns around data sharing, and how it will be managed and governed, by working towards providing secure access to data within Trusted Research Environments.
These provide approved researchers from authorised organisations with timely and secure access to health and care data, enabling collaboration within the same research project.
This keeps the data fully within our control and only provides access to the data the researchers are authorised to access, within the security perimeters of the Trusted Research Environment. The service can then monitor and track who has accessed the data and it can never be shared with unauthorised people or linked to other datasets without our approval.
So, by its very design, the service aims to protect the privacy of those whose data it holds, so patients can rest assured that their health records are handled safely, and privacy and confidentiality risks are minimised.
Finally, there was the burden of ‘Type 1 opt-outs’ on GPs and practice staff. We’ve been engaging with the profession to identify ways in which we could reduce that burden, while also providing a good customer experience for anyone who chooses to apply a ‘Type 1’ opt-out.
Three critical friends to assure consistency
Having expert, independent opinions is crucial to ensure that our work remains on the right track. With this in mind, we set up three external assurance groups to act as ‘critical friends’ and to check our thinking as we work.
For independent advice about information governance and legal issues, we set up the Information Governance Expert Liaison Group. This is made up of representatives across a range of stakeholders including NHS England, the Department of Health and Social Care, the Information Commissioner’s Office, the Office of the National Data Guardian, the Confidentiality Advisory Group and the Independent Group Advising on the Release of Data (IGARD).
The Patient, Public Engagement and Communications Advisory Panel gives a patient and public perspective on our work, providing a regular forum to share ideas, concerns and best practice around data sharing, as well as inviting views on the best ways to engage with patients and the wider public in an accessible way. They ensure that the voice of the patient is clearly heard as we continue to refine the programme.
Finally, the Check and Challenge Assurance Group is made up of experts who are able to scrutinise our ideas and plans as they develop. Valued stakeholders such as the British Medical Association, the Association of Medical Research Charities and the Office for National Statistics, amongst many others, can represent the views of the profession, data usage, data sharing and wider data community and challenge where the approach of our programme is thought to be diverging from the commitments and conditions made over the last year.
All of these groups ensure that the new GP data for planning and research programme remains on course to deliver the clear benefits that it will bring to patients, the public and the NHS, itself.
Onto the future of data
We are absolutely committed to improve how we use data in an open, transparent, and inclusive way, to help us understand how and where to improve health and services and treatments. 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. While we paused our public engagement to work out the proper programme approach, we now hope to see a lively conversation and debate in this vital area. We’re looking forward to working with you.
