The AusCP-CTN CRE is committed to involve consumers in our research, so that their opinions, thoughts, and issues that are important to them are identified, prioritised, and well communicated. It is a National Health and Medical Research Council priority for research conducted within the centre to involve consumers in research, from co-designing our clinical trials, undertaking cultural adaptation, reviewing study materials, informing communities about outcomes using a participatory design framework.
In 2017, the AusCP-CTN held its very first ‘Involving Consumers in Research – Trading Places’ workshop, which aimed to demystify research for parents and to identify priority areas for future research that families feel are of high importance. The workshop was delivered by Anne McKenzie AO from the Telethon Kids Institute, who is an internationally recognised expert on training for consumer engagement. The workshop brought together 17 parents of children with cerebral palsy to share their lived experiences. A second workshop was soon held for a further 21 researchers to help them learn about the struggles faced by families including the questions they most want answered, and the issues they want researchers to better understand.
Find out more about the workshop Trading Places.
Since then, AusCP-CTN has taken on the mission of ensuring voices of families are heard and that people and families with lived experience are involved to guide our research. To date, we have trained over 75 people with Lived experience and families, through collaborative programs hosted by organisations such as Cerebral Palsy Alliance, The Qld CP Rehabilitation & Research Centre, and Qld Children’s Hospital. The AusCP-CTN has been in continual dialogue with Anne McKenzie, so that her expertise and knowledge in effective consumer engagement is disseminated across the AusCP-CTN research and clinical communities. In 2021, Anne and her colleagues at the Telethon Kids Institute have developed a ‘Train-the-Trainer’ program to train researchers, clinicians and people with lived experience to become trainers of Clinicians and Researchers on Consumer Engagement. Eleven clinicians and researchers across the AusCP-CTN has formally participated in the Train-the-Trainer program led by Anne McKenzie AO, and have collaboratively facilitated 2 workshops to the broader community. Queensland-based trainers will be further involved in working UQ’s Faculty of Medicine in establishing a local consumer engaging training program.
Parents of children with cerebral palsy who wish to be involved in research can be a part of the Australasian Cerebral Palsy Clinical Trials Network Centre for Research Excellence Consumer Network, or get involved in our current studies.
