PPI Patient Voice in Cancer Research, patients with a lived experience of Cancer visit and lab tours of the Conway Institute, participants in white coats on the stairs in the Conway A test[/caption]
On Wednesday 1 July, people with lived experience of cancer joined St Vincent’s UCD Cancer Centre and The Patient Voice in Cancer Research (PVCR) for a training day on Public and Patient Involvement (PPI). The day was designed to equip participants with the knowledge, skills and confidence to become active partners in cancer research and clinical practice.
Public and Patient Involvement means people affected by cancer working alongside researchers and clinicians as partners. It is work done with or by patients, rather than to or for them. That can mean reviewing patient booklets, sitting on advisory boards, or helping researchers ask the questions that matter most to patients.
Professor Amanda McCann opened proceedings, outlining the principles of PPI and reflecting on ten years of PVCR’s work before handing over to Gillian Costelloe, who offered a personal account of life as a patient partner, such as the confidence it takes, the boundaries it requires, and what it actually looks like to influence a research project from the inside. Martin Sweeney and Dr Noa Gordon then took the stage together, patient partner and researcher side by side, to show what that partnership looks like once it’s up and running day to day: trust, mutual respect, and recognising that both bring expertise the other doesn’t have.
From there the focus shifted to the science itself. Dr Arman Rahman walked participants through how academic cancer research actually happens (where ideas come from, how studies get funded, and what a research career looks like from the inside) before the group headed into the labs to see that process in person and meet the teams doing the work. After lunch, Dr Paula Lynch picked up the thread, explaining how those laboratory discoveries move into clinical trials and demystifying how trials are designed, regulated and delivered. Louise McDonnell then brought it back to the patient experience, mapping out how cancer care itself is organised, from diagnosis through multidisciplinary decision-making to survivorship, and where patient perspective can shift how services are delivered.
The day closed with a practical, forward-looking session led by Patient Partners, Mary Staunton, Gillian Costelloe and Séamus Conaty on how to become a meaningful partner at St Vincent’s UCD Cancer Centre and beyond.
Interested in becoming a patient partner? Contact the St Vincent’s UCD Cancer Centre at crpo@ucd.ie.