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RESEARCH ARTICLE (Open Access)
Contents Vol 33(1)

Development of the Consumer Involvement & Engagement Toolkit: a digital resource to build capacity for undertaking patient-centred clinical trials in Australia

Tanya Symons A , Janelle Bowden B , Anne McKenzie C , Julia Fallon-Ferguson D , Leanne Weekes E , James Ansell F , Rinki Murphy G , Shilpa Jesudason H , Manoj Saxena I , Alistair Nichol J K and Nicola Straiton L *
+ Author Affiliations
- Author Affiliations

A University of Sydney, NSW, Australia

B AccessCR Pty Ltd, Sydney, NSW, Australia

C Telethon Kids Institute, Perth, Western Australia

D School of Population Health, Curtin University, Perth, Western Australia

E Clinical Trials: Impact & Quality (CT:IQ), Melbourne, VIC, Australia

F Consumer Health Forum of Australia, Canberra, ACT

G Faculty of Medical and Health Science, University of Auckland, New Zealand

H Royal Adelaide Hospital, South Australia

I Bankstown Hospital, South Western Sydney Local Health District, NSW, Australia

J Australian and New Zealand Intensive Care Research Centre, Monash University, Melbourne, VIC, Australia

K University College Dublin Clinical Research Centre, St Vincents University Hospital, Dublin, Ireland

L Australian Clinical Trials Alliance, Melbourne, VIC, Australia

* Correspondence to: nstr4913@uni.sydney.edu.au

Public Health Research and Practice 33, e32122209 https://doi.org/10.17061/phrp32122209
Published: 13 March 2023

2023 © Symons et al. This work is licensed under a 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.

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.

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