We’ve talked to people about their understanding and their feelings about sharing this information to support research and improve planning in the NHS.

We’ve talked about de-identification of data to protect people’s privacy and we’ve sought to understand when and why people support using data to improve health and care – and when they don’t.

And we’ve ended up with a pretty complex picture. There is quite a lot of misunderstanding and, in some groups, there are a variety of concerns about the use of personal information. But that isn’t the whole picture. There is also significant trust in the NHS and most people believe in its ability to keep data safe and use it responsibly. There was quite a widespread understanding of the power of data and how it can lead to breakthroughs in treatment and care.

The GP Data for Planning and Research (GPDPR) programme was halted in the summer of 2021. It was redesigned to allow us to better understand the concerns of patients, GPs and the public and to ensure that key conditions are met before any collection of data begins.

The redesign includes running a public awareness campaign so people have clear knowledge of what data we intend to collect and how to opt out (or back in again). To do this properly, we need patients, the public, GP staff and others to help us to shape the programme and to create the right materials, and to do that we have first had to listen to people and find out what they understand and think about GP data.

We launched the ‘listening phase’ of the programme in December 2021. We‘ve sought the views of patients, GPs and practice staff, the public, doctors’ representative groups, patient data experts (such as the National Data Guardian and the Information Commissioners Office), and researchers and medical research charities.

The listening phase report highlights our findings and includes the full results of our public survey. You can explore the questions we asked and the answers people gave for yourselves.

We heard that the opt out process is confusing and that it needs to be made clearer. 

People were not always sure exactly what it was they had opted out of. We also found that around a third of people said they believed they had, or were likely to, opt out. Based on existing opt out rates, we know this figure is above what is expected so we plan to engage with this group further to better understand their views. Some parts of the population were over-represented in this group, such as younger age groups and certain ethnic and socio-economic groups.

But people did see a connection between their patient data and how it could be used to benefit their communities and broader society.

People trust the NHS to keep data safe but were less trusting of third parties accessing that data.

We also heard, loud and clear, that the language we use at the moment is too complex and full of jargon.  While people have opinions about data use, they don’t necessarily have the bandwidth to spend a lot of time learning about the subject. We have to speak more clearly if we want people to make well informed decisions about how their GP data is used.

The listening phase report is not the end of us listening. The next stage will be a deeper exploration of attitudes, beliefs and understanding and we will begin to co-create the messages and materials that will make the public awareness campaign a success. The listening phase has helped us to set benchmarks about understanding of GP data, attitudes about how it’s used, awareness of GPDPR and the programme’s aims, so we can measure how these things change.

The listening phase has provided some really useful insight into how patients, the public and GPs really feel about this topic and has also given us some new avenues to explore.

This isn’t a project that we could or want to deliver on our own. I would like to thank all those who have given their time to attend focus groups, fill out surveys, sit on our assurance groups and to provide us with feedback so far. There will be plenty more opportunities to engage with us, so please do.

We are currently looking for members of the public who are interested in this topic and want to get involved. If you are interested, please drop us an email and we'll be in touch with details of how you can get involved.