OpenSAFELY at the National Patient Data Day in Leeds

On the 24th June 2025, OpenSAFELY had the privilege of running a booth at the National Patient Data Day in Leeds. This event was organised by use MY data, an independent movement of patients, relatives and carers in the UK focused on the use of patient data to save lives and improve outcomes. We were invited to participate by Samina Begum, an OpenSAFELY Digital Critical Friend and member of UMD, and we had a lovely day of talking about OpenSAFELY and responsible research use of sensitive data.

As this was the first Conference UMD had organised, it was important to have OpenSAFELY involved in the conversation around patient data. This would also build on working collaboratively in the online education sessions with UMD.

Being part of the Digital Critical Friends with OpenSAFELY, for me it’s important that the benefits of health data research are communicated in a variety of formats. The conference was also an opportunity to learn from organisations attending on the day, how they engaged with the public on patient data, and hear from patients perspectives on the day.

— Samina Begum

Three of us from the Bennett (Simon Davy, Frederica Longfoot and Eli Holderness) attended the day, and between us we spent the entire day in conversation with both audience members and other exhibitors.

The overwhelming message from the day is that the public - as the true owners of the data in question - need to be considered as first-class citizens when it comes to outreach and education. Those of us involved in using sensitive data need to commit to using clear and precise language when communicating with members of the public, and to provide multiple avenues for people to get in touch with any questions and concerns.

We had some particularly interesting conversations with Mark Avery, the Programme Director for the East of England NHS Secure Data Environment, and Pete Barnsley of the Francis Crick Institute, about federated analysis and possible future models for building federated secure systems. We discussed the DARE UK proposal for federated architecture as well as how our respective platforms could possibly integrate with such a model. We also spoke to a number of patients and members of the public which helped us to understand the public perception of OpenSAFELY, their burning questions, and feedback about use of the platform and ways to engage with the public

We were also able to spend time talking with some of our Digital Critical Friends, as well as our external PPIE consultants Andy Gibson and John Kellas:

Panels and discussion groups were held throughout the day, opening with a panel on patient data policy and covering topics like demonstrating the impact of data usage to the public, potentials for non-COVID usage of GP data, and the quality characteristics of routinely collected health data. The agenda was designed by and for patients in collboration with UMD, to put patients at the heart of conversations about their health data.

We were joined by some excellent keynote speakers, including Nicola Byrne, Alex Newberry, Roger Halliday, and Ming Tang. Ming highlighted OpenSAFELY as a platform that does good work in enabling the use of GP records in England - thank you, Ming!

There was also discussion of rare medical conditions and the role that OpenSAFELY could play in supporting such research, which was very exciting!

Finally, of course, we had to take a classic Bennett Pointing photo, this time accompanied by Andy, John, and Arif (one of our OpenSAFELY Digital Critical Friends):

The National Patient Data Day was a delightful event to attend, and we came away from it with plenty of ideas and messages on which to reflect as we move forward. We’re always looking for ways to communicate the work of OpenSAFELY, and build our community. If you’d like to get involved, please feel free to come along to one of our online events, or email us at team@opensafely.org!