Advocating for consumers to be partners, not just participants
Mitch has been a health consumer advocate for over 40 years and is the 2024 Western Australian of the Year in the Community category. His advocacy journey has been to positively impact on the disconnect between health researchers, providers and consumers. This prompted his vision to have research and medical services focus on consumer needs, rather than the needs of service providers and policy makers.
In his current role at The Kids Research Institute Australia (The Kids), he seeks to bridge the gap between researchers and the community, mentoring and facilitating collaboration to translate research into meaningful improvements.
How did you get involved with BEAT-CF?
I got involved with BEAT-CF when I was invited to a meeting with Tom Snelling, who was CIA on the project. Antibiotics are used as a core part of the medical management of cystic fibrosis (CF) lung exacerbations, however the length of treatment, choice of antibiotic and route of delivery are generally dependent on clinician choice. The BEAT-CF trial was designed to optimise the use of antibiotics. I participated in discussions about what BEAT-CF was trying to achieve and how it would look, so have been involved very early since before the grant application had even been written up.
What was your role in the trial, what kind of input did you provide, and at what stages?
I supported the team to initially run workshops with individuals, parents and partners of people with CF while the grant application was being developed. This helped provide information and feedback about what an adaptive platform trial (APT) design was to inform the community. As the consumer advisor, my role was to manage consumer reference groups (which had 23 members), provide advice to the research team, and provide input as a member of the steering committee and operations group.
How did the research team support you to contribute effectively?
I was provided with a lot of information about the nature of platform trials. I am not a scientist, clinician, or researcher, so the research team were good at keeping me informed about what they wanted to do so that I could translate that back to the consumers. The research team have been supportive of other issues along the way which has helped me to upskill and support consumer reference group members to learn and understand. I always felt respected and was seen and supported as a valuable part of the team.
They provided support to attend the ACTA conference where I had a poster presentation about consumer involvement and was also provided support to attend CF conferences.
What impact do you think your input had?
One example of my impact and the reference groups’ was a change with the ethics submission. The reference group pushed back on the ethics committee explaining why they thought a decision that had been made to only allow paper-based consent was incorrect due to the burden on participants. They then changed this and allowed for both electronic and paper consent.
Also, when the first protocol was being developed looking at use of secondary antibiotics, the reference group asked what the evidence for a secondary antibiotic was. The feedback was that there was limited evidence and that it had always been that way. The reference group fought for a single antibiotic arm to be added to the protocol.
Consumer involvement occurred at every stage, from pre-ethics to development of the protocols, inclusion of nested studies and plans for new projects. This enabled changes to be made along the way and for consumers to be partners, not just participants.
What would you tell other consumers considering getting involved in research?
If people are interested, I would tell them that being a consumer is a really good thing to do. Consumers have a different knowledge base and skill set compared to researchers or clinicians but they are just as valuable. Development of study protocols can be difficult for individuals to participate in but knowing what is important to consumers and sharing what is important to community, will result in better protocols and research outcomes. Consumer involvement can improve study design by helping make procedures better and reduce the burden on participants. Consumers can have a significant impact by being involved in the development of projects to ensure they are asking questions that can lead to outcomes that are useful and utilised.
What resources and support did you use? And were there any resources you wish that you had access to?
I used the Statement on consumer and community involvement in health and medical research – NHMRC as a basis, plus working at the Kids Research Institute, they have great tools and processes to follow, and provide training for consumers on reference groups, as well as researchers. There are a lot of resources out there, but it can be difficult to know where they are
and how to access them. We used the ACTA/CT:IQ Consumer involvement and engagement toolkit which provides practical advice and a growing collection of dedicated resources for both researchers and the community.
What’s been the most rewarding part of this experience for you?
Having a voice, being heard and knowing that what you are doing is having a benefit to others and leading to improved outcomes.
What were the main challenges you faced being part of the research team?
I worked part-time on the project, so things could progress while you were away, and you needed to catch up so as not to miss things. Also, keeping the reference group up to date with everything was a challenge. In order to help them feel valued, joint reference group meetings were established. Sessions were extended for consumers without clinicians/researchers to allow questions and explain jargon in order to better understand terminology. The opportunity for informal chat was also really helpful.
Reference group meetings were all held online due to infection issues and being dispersed nationally. This facilitated better interaction
and relationship building, which helped maintain engagement.
How did you get involved with ACTA?
I became involved with ACTA through BEAT-CF and was supported to attend and present a poster at the ACTA symposium.
I was asked to be involved in adaptive platform trial (APT) clinics, present at APT workshops, participate on panels, and join the ACTA Consumer Engagement, Equity and Diversity working group. ACTA has been a rewarding organisation to work with; it has helped build my knowledge and understanding of clinical trials and I have enjoyed working alongside research investigators and to meet other consumers involved in clinical trials in order to build a supportive network.