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Development of the Consumer Involvement & Engagement Toolkit : a digital resource to build capacity for undertaking patient-centred clinical trials in Australia
Symons, Tanya Bowden, Janelle McKenzie, Anne Fallon-Ferguson, Julia M. Weekes, Leanne Y. Ansell, James Murphy, Rinki Jesudason, Shilpanjali Saxena, Manoj Nichol, Alistair
Symons, Tanya
Bowden, Janelle
McKenzie, Anne
Fallon-Ferguson, Julia M.
Weekes, Leanne Y.
Ansell, James
Murphy, Rinki
Jesudason, Shilpanjali
Saxena, Manoj
Nichol, Alistair
Abstract
Objective: This manuscript describes the novel approach to developing a toolkit to support meaningful consumer involvement in clinical trials in Australia to help guide others in considering the development of similar resources.The toolkit aims to support greater consumer involvement in shaping how clinical research is prioritised, designed and conducted.
Type of program or service: A working group of researchers, research organisations and consumers was established to co-develop the Consumer Involvement and Engagement Toolkit (the ‘Toolkit’), a digital resource to guide researchers and organisations regarding consumer involvement in clinical trials.
Findings: A literature review and international scan of best practice revealed numerous resources outlining best practice for consumer involvement in clinical research and clear evidence of its impact and value. Through a novel content-sharing process, we were able to utilise these resources to develop a comprehensive Toolkit for researchers and research organisations that provides world-class guidance.
Lessons learnt: There is a growing movement to ensure consumer involvement in healthcare, including in clinical research. We discovered its proponents were willing to share their tools and resources to promote international consumer involvement. Although these international tools and resources needed adaptation to suit the Australian research environment, this was achievable with far less effort than developing them from scratch.
Keywords
Date
2023
Type
Journal article
Journal
Book
Volume
33
Issue
1
Page Range
1-6
Article Number
ACU Department
Nursing Research Institute
Faculty of Health Sciences
Faculty of Health Sciences
Collections
Relation URI
Event URL
Open Access Status
Open access
License
CC BY-NC-SA 4.0
File Access
Open
Notes
© 2022 Symons et al.
Diamond open access. This article is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International Licence, which allows others to redistribute, adapt and share this work non-commercially provided they attribute the work and any adapted version of it is distributed under the same Creative Commons licence terms. See: www.creativecommons.org/licenses/by-nc-sa/4.0/
Diamond open access. This article is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International Licence, which allows others to redistribute, adapt and share this work non-commercially provided they attribute the work and any adapted version of it is distributed under the same Creative Commons licence terms. See: www.creativecommons.org/licenses/by-nc-sa/4.0/