6 June 2024

A live artist put a new spin on the telling of patient stories during a recent conference presentation around patient and public involvement (PPI) in research and hereditary colorectal cancer.

Bowel Research UK PPI Manager Sam Alexandra Rose spoke at Oncology Professional Care conference at Excel, London on 22nd May 2024. Sam joined Laura Monje-Garcia, National Lead Nurse for the Lynch Syndrome Project at St Mark’s Centre for Familial Intestinal Cancer. First, the two presented on “The How and Why of PPI”, with Sam explaining what PPI is and how it is put into action at Bowel Research UK, before debunking nine common PPI misconceptions. Laura discussed PPI resources, frameworks, practical tips, and PPI goals during each phase of research.

The second session featured patients from Laura’s PPI group, the Polyposis and Lynch Enrichment team. Tom, Emma, Tracy and Sam told stories about their experiences of Lynch syndrome, polyposis, bowel cancer, and navigating the healthcare system. As they spoke, artist Francesco Tassi drew “visual minutes” to illustrate key points. The digital artwork appeared on a screen behind the speakers and the audience saw the visual minutes being created in real time, adding a new dimension to the presentation.

Oncology Professional Care Conference 2024 Visual Minutes - Patient stories interrogating the multi-disciplinary pitfalls of the patient pathway: A visual story

You can view a full screen version of the visual minutes here and we recommend zooming in and out to read the key points and see everything in detail.

Common themes throughout the stories included the importance of good communication and listening in the healthcare system, the psychological impact of Lynch syndrome, the effect it has on families and relationships, and the burden of self-advocacy on the patient.

You can listen to Sam’s presentation on “The How and Why of PPI” and her patient stories from the conference in an episode of our podcast “Can I Butt In?”, released on Wednesday 3rd July 2024.

If you are a researcher who would like help involving patients in your research, or you are a patient or member of the public interested in contributing to research, read about our PaRT network here.