Community Involvement in research is more than just participating in a study. It's having the opportunity to be part of decision-making processes that can affect real impact for those living with T1D and those that care for them.
A Consumer Representative is an individual person who voices consumer perspectives on behalf of other consumers, albeit with a narrower view. They bring lived experiences to the table so that children and young people living with T1D remain the focus of all our research, ensuring that research outcomes and new models of care will be fit for purpose.
Currently, there are:
- 15 Type 1 Diabetes Community Advisory Group (T1DCAG) members nationally;
- 2 Management Steering Group members;
- 3 Health Economic Working Group members;
- 11 Reference Group members;
- 3 Research Buddies.
What have our Consumer Representatives been working on?
2025 Symposium – T1DCAG members are starting to prepare to be involved in the Centre’s 2025 Research Symposium to be held in Perth, Western Australia in August.
Up first on the Symposium program will be a community panel session where attendees will have the chance to ask the panel members questions on a selected research theme. This is an opportunity for panel members to share their real life experiences and knowledge with Centre researchers and collaborators.
Health Economics Working Group – T1DCAG members were asked to share their personal stories with the wider Health Economics Working Group, specifically about the challenges they face every day living with T1D or caring for a child living with the condition. The financial, social, and mental health impacts were just some of the experiences shared that brought a real life aspect to economic challenges.
These experiences will help inform the Health Economics Working Group’s programs of work, including advocating for change in government policies.
Research Buddies – Research Buddies work directly alongside researchers on specific projects. They provide guidance and advice on research protocols, project design, communication, and recruitment.
Our Research Buddies have been working on the following projects:
- TRACE-T1D - Using Continuous Glucose Monitors (CGMs) as a metric to identify possible markers for early-stage T1D.
- Early Pump Access - Providing early access to insulin pumps at diagnosis and the improving the impact on Hba1C.
- Disclosure - Developing a model of care that supports teens as they transition to adulthood, including who to tell and when to tell they live with T1D and reduce instances of stigma.
- DiabHQ - Progress continues in developing a data hub for clinical and research purposes as well as a Patient Portal where families and young adults can access their clinical information easily and in one place.
- CaLD Resources - Development of specific resources that support information and knowledge sharing with families from culturally and linguistically diverse backgrounds. It's hoped that these resources will help these families understand and implement management strategies to support their child's health.