Working to Improve Care Through Research Event
More than a tick box
Patient and Public Involvement and Engagement (PPIE) is a term researchers are becoming increasingly familiar with. When writing bids to secure funding for our all-important research, we are often asked to explain how patients and the public will be involved throughout the process and how research findings will be made accessible and engaging. At NICHE–Leeds, we do the same. However, the partnership is a long-term project that enables us to work with communities between and alongside other research projects. The decision to host our Working to Improve Care for People Through Research event was not simply about securing funding or ticking a box on an application. It came from a genuine desire within the research team to expand our networks and learn from people using services.
Introductions
The sun was shining, and we had a sweeping view of Leeds from the eighth floor of The Studios building. Tables draped in navy blue were decorated with gift bags from NICHE, Westward Care, Springfield Health, and HC-One. The room was alive with chatter, and even the booming microphone struggled to cut through the crowd. There was a diverse mix of people who had come to learn more about NICHE–Leeds and research more broadly.
Professor of Nursing Karen Spilsbury opened the event and spoke about social care in Leeds and the NICHE–Leeds partnership.
We remained mindful that this may have been the first time some of our guests had engaged with research. Some may not have been familiar with what research means, why it matters, or how it can create meaningful change in their own lives.
Our research
Among the pastries and coffees, we broke down our ongoing research. Dr Nicky Taylor from our partner university, Leeds Beckett, discussed her project on accessing nature in care homes. Dr Kirsty Haunch spoke about recruitment and retention, while Dr John Ratcliffe shared his work on loneliness in care homes. Finally, Dr Jetske Erisman discussed integrated care at home, giving attendees a taste of the broad range of research we are undertaking. Questions from the public encouraged us to reflect carefully on our portfolio of work, as attendees spoke passionately and bravely about their own experiences and priorities.
Our Family and Friends panel
We also created space for our Patient and Public Involvement Group, Family and Friends — a long-established group made up of people who have had a loved one living in a care home. Janet, Yvonne, Jane, Claudette, and Versha all spoke about their involvement in the group. They worked to dispel misconceptions and explained research simply as “answering a question, then figuring out how to improve.” They spoke about how they were not researchers, but that this did not matter — they were experts through their lived experiences. They also reflected on how being part of the group helped them feel they were making a real difference in improving care.
Learn more about our Family and Friends group.
Breakout groups
The event then broke into smaller groups, with academics sitting one-to-one or in small discussions with members of the public and asking:
- What type of social care have you experienced?
- What matters most to you, and what should be researched?
There were many thoughtful suggestions, including ideas around digitalisation, communication, technology, workforce challenges, and hearing loss — points that we may not have heard without this event.
This event reinforced that PPIE must be a reciprocal relationship — one where people feel heard, valued, and able to shape research priorities. It highlighted the range of complex issues present within social care, all of which warrant deeper exploration. We remain committed to creating opportunities like this, ensuring that people with lived experience continue to influence and inform our work.
Thanks to...
A special thank you to Dr Reena Devi, Dr Emma McLorie, Iria Cunha, Bronte Heath, Sara Rodgers, Atlanta Bradshaw, Sue Lund, and Cecile Bremont for all your hard work in planning and running the event.
By Dr Terry Hall and Manaal Adam
15/05/2026