Reflections from the First National Patient Data Day
On 24 June 2025, the first ever National Patient Data Day took place in Leeds - a landmark event led by patient advocacy group Use MY Data. For us in the North East and North Cumbria Secure Data Environment (NENC SDE), it was a valuable opportunity to connect our local public members with a national conversation about how patient data is used, and how patient and public voices can shape the future of research and care.
About Use MY Data
Use MY data is the UK’s only independent movement of patients, carers, and relatives focused entirely on how health data can be used to save lives and improve outcomes. Frustrated by barriers to data access for research, the group was formed to advocate for three core aims:
- · A single patient record
- · Better use of existing NHS data to improve services
- · Better research to improve care, shaped by patient voices
The Leeds conference brought together around 75% professionals and 25% public contributors, reflecting the bridging role use MY data plays. Attendees included academic researchers, data organisations, NHS staff, industry partners, and patient advocates, including two of our own NENC public contributors, Rosemary Nicholls and Pepper, who joined me on the day.
Learning and Inspiration
The event programme featured a mix of plenary talks, breakout sessions and informal networking. A consultant from Moorfields Eye Hospital delivered a moving presentation about how data had helped prevent avoidable sight loss – a talk that many described as one of the day’s most impactful moments.
Former BBC journalist Rory Cellan-Jones shared his personal experience of living with Parkinson’s disease and called for more positive narratives around the use of health data to accelerate research and improve care.
Sharing and Improving Practice
Breakout sessions covered a range of themes, including digital pathology, AI in healthcare, cancer data and secure data environments. Public contributors from NENC SDE were particularly interested in how other regions, such as the South West, involve patients in governance, communications and operational decision-making.
Quote from one of our public members, Pepper:
“It was a full-on day, which I found very worthwhile. There was lots of opportunity to all informally, and to talk with exhibitors – it helped me understand the range of organisations involved in health data and how they each play a role. I reflected on the way home why so many data organisations (charities and commercial) are willing to sponsor an event like today… I decided it is because it is in their interest for patients and the public to be happy for their health data to be used. As a result of the event I signed up to the organisation Use My Data and I have appreciated the weekly email that lists all the opportunities to get involved in research using patient data.”
Quote from one of our public members, Rosemary:
“The Leeds conference drew delegates from all over the country, with about 25% public contributors. There was lots of opportunity to network and explore the role of different organisations in using health data. The sponsors ran stalls, and I had the chance to challenge UK Biobank on past decisions, it was inspiring to hear that public contributors had helped reverse one of them.”“The most moving part of the day was a session from a consultant at Moorfields Eye Hospital, explaining how data had helped save people’s sight. I felt that a recording of his presentation, which was fairly brief, could persuade more members of the public to share their data than all the other methods added together.”
While there were some concerns around accessibility of digital tools used on the day, the event offered a strong platform for shared learning and continued engagement.
Find out more about use MY data: www.usemydata.org.uk
