On 10th October 2022 a workshop was held at the Institute of Cancer Research to talk about “How people make decisions”, led by the CanGene-CanVar Work Package 4 Team, whose work focuses on developing patient resources.
The workshop was run by Kelly Kohut a genetic counsellor, and Dr Kate Morton a health psychologist with a fascinating presentation from Dr Karen Hurley, a health psychologist from the Cleveland Clinic in America. There were several facilitators present taking notes from St George’s University Hospitals NHS Foundation Trust and the Royal Marsden NHS Foundation Trust.
The workshop was attended by the CanGene-CanVar Patient Reference Panel members and members of the prostate research group, BRCA-DIRECT and Black in Cancer. Some PPI representatives were able to dial in via Zoom.
Dr Karen Hurley discussed Social Cognitive Theory, the Health Belief Model and cognitive heuristics and the Self-determination Theory. She also talked about the rational vs the emotional model and the Ottawa Decision Support Framework. This sparked lively discussions amongst the patient advocates present who worked in small groups discussing their own decision-making processes during their cancer diagnosis. The groups looked at a patient decision aid that is currently being co-produced for Lynch Syndrome and will form a template for other genetic conditions.
An artist spent the day with the groups listening to the conversations and capturing the ideas discussed in a huge graphical picture.
Several themes came out of the workshop which will inform a paper to be co-produced by those attending the day.
The day was thought provoking, full of energy, entertaining and stimulating. We would like to thank all those people who attended, presented, took notes, and listened.
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Written by Lesley Turner, Chair of the CanGene-CanVar Patient Reference Panel
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