Cairn is the public-facing part of Edinburgh IBD. It brings patients, families, clinicians and researchers into conversation about what matters, what remains uncertain and what better care should look like. Patient partnership helps us ask useful questions and understand the practical consequences of the work we do.
Conversation and shared understanding
Our Edinburgh IBD Patient Day in June 2026 brought people together to discuss research, treatment and life with IBD. The September event, Understanding IBD therapies, continued that conversation with talks and questions about treatment principles, medicines and monitoring. These events create room for discussion alongside the formal presentation of research.
The Edinburgh IBD newsletter shares updates from the team, while Atomic IBD brings Charlie’s perspective on research, clinical care and the questions shaping the field. Both help keep the conversation going between events.
Questions shaping current work
As we prepare SENTINEL for a feasibility study, we want to understand what people need from monitoring between appointments. Which information would help them? How often would they be comfortable sharing symptoms or providing samples? What would make a digital tool useful, and what might make it burdensome or difficult to trust?
We are also considering how patients’ preferences should shape follow-up. Someone who feels well may want less disruption, while another person may value more contact. In either case, the plan needs to be understandable and agreed, with a clear way to seek help when circumstances change.
Participation that matters
Cairn’s aim is to make patient involvement part of how research questions, tools and communication are developed. Current priorities include meaningful opportunities to contribute to proactive monitoring, accessible education and patient stories told in people’s own words. The test is whether involvement changes the work and makes it more relevant to the people living with IBD.
Join our patient focus groups to help shape the research, from generating ideas to sharing what we learn.