Kelly Gleason, Lead Nurse at the Cancer Research UK Imperial Centre shares her reflections on starting and running a Science Café; a safe space to bring together researchers, clinicians and members of the public to learn and share knowledge about cancer research
How it all started?
In 2010 I attended the International Association of Clinical Research Conference in the USA. That year, the keynote speaker, Mr Charles Sabine, gave a very powerful and emotive talk about Huntington’s disease and the importance of research in this area.
Mr Sabine had lost his father to Huntington’s disease; his brother was in the advanced stages of the illness and he himself had chosen to have genetic testing to find that he too carried the gene for Huntington’s.
This entry is part [part not set] of 1 in the series Case studies
In conversation with: Emma Lidington, PROFILES Trial Manager
Working within/Team name: PROFILES Team, Royal Marsden NHS Foundation Trust, The NIHR Biomedical Research Centre (BRC) at The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research
The value of lived experience
Experts have recommended that academics should actively involve patients and the public in every phase of research to meaningfully incorporate the voice of those with lived experience. However, achieving this goal can seem daunting, particularly as an early career researcher. In our project, the level of patient involvement evolved over the course of the study, with the Public Involvement Research Hub and local funding from my institution as huge drivers of that change.
CRUK Senior Research Nurse, Kelly Gleason, shares how one patient’s vision continues to inspire her, and influence how we involve and engage the public in healthcare and research design at Imperial.
Sunday evening, November 14th 2014, we stood in the dark on Exhibition Road, staring through the large glass windows into the main entrance of Imperial College London. There stood twenty-four portraits, assembled as six pillars, ready to tell their story. A woman in a black dress sitting on an aluminium step stool wearing a carnival headdress, a man in leathers on a motorcycle, a toddler in her dad’s arms gesturing a story with her hands, these were the people keeping Rina Dave alive.