Clarissa Schilstra, Postdoctoral Research Fellow at the Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital and UNSW, shared on LinkedIn:
“I’m incredibly excited to share our new paper, ‘Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts’
recently published in the Journal of Cancer Survivorship.
What makes this publication particularly special is that it was entirely led by researchers with lived experience as cancer survivors: Anna Glinatsis, Mark Emery, Christabel Cheung, Brad Zebrack, Andrea Smith, Ursula Sansom-Daly, and myself.
This review explores the conceptualisation and implementation of lived experience leadership in cancer research. We highlight how being ’embodied researchers’ – in the words of the incredible Christabel Cheung, PhD, MSW – makes our research leadership important, unique, and meaningful.
Making space for the recognition of lived experience leadership, and the roles embodied researchers play in prioritising, conducting and disseminating research, is more important than ever. More than 80% of the world’s population will experience cancer either directly, or through a close family member.
The future of cancer research is stronger when those most affected by cancer are empowered to lead.”
Title: Lived Experience Leadership in Cancer Research: A Scoping Review of Conceptual Definitions, Roles, Responsibilities, and Impacts
Authors: C. E. Schilstra, A. Glinatsis, M. Emery, B. Zebrack, C. K. Cheung, A. Smith, U. M. Sansom-Daly