The Canadian Association Psychosocial Oncology Conference took place in Montreal from 20th June - 22nd June 2023.
Kelly Kohut and Lesley Turner were selected to run a pre-conference workshop on blending lived experiences and psychosocial theorising towards co-design of patient decision aids in genetic cancer risk assessment at the Canadian Association of Psychosocial Oncology (CAPO) Conference held in Montreal Canada.
The 3.5-hour workshop was interactive featuring presentations from Professor Mary Jane Esplen (Department of Psychiatry, University of Toronto) on dealing with uncertainty, talking to family, personalised cancer risks, management, and support. Kelly Kohut talked about how she worked with patients to co-design a patient resource using the example of the Lynch Syndrome decision aid, and Lesley Turner talked about the CanGene-CanVar Patient Reference Panel and how the group are key research partners from conception through to dissemination. She talked about the value the group has had on the programme and why co-design matters.
A local artist (Kevin Jenne) was commissioned to produce a live visual painting at the session on co-design which sparked lively conversations. His vision was one of balance between patient partners and clinicians. The birds in his picture represent ideas flowing between people in a continuous dialogue. The lilies in the picture represent life and death, and he added in the skyline of Montreal to document where the picture was painted.
The theme of the conference was co-design and there were numerous talks from patients on building bridges between researchers and patient advocacy communities to benefit and improve the care and support of people diagnosed with cancer.
The conference itself was fascinating and an opportunity to network and learn about the Canadian experience of co-creation/co-design between researchers and their Patient Partners. Funding support was provided by Kelly’s grant from the University of Southampton Faculty of Environmental and Life Sciences Higher Education Innovation Fund.
Written by Lesley Turner, Chair of the Patient Reference Panel, 26th June 2023