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. You can find out more about our Community Involvement Framework here.
Currently, there are:
- 16 T1D Community Advisory Group (T1DCAG) members nationally, and growing;
- 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?
T1DCAG
- 10 Year Centre Strategic Plan – T1DCAG members took part in a priority setting event that explored where the Centre is at now, where the Centre wants to be, how the Centre is going to get there and how we know we have arrived.
- Members had the opportunity to share their big research ideas, explore relevant research themes and vote on their top 6 research priorities that were presented to the Centre’s Management Steering Group as recommendations to be included in the Centre’s 10 Year Strategic Plan.
- Outcomes of this priority setting event will be shared at the Centre’s Symposium in August this year, with researchers having the opportunity to ask T1DCAG members questions about these priorities and how research led by community benefits community.
- Socioeconomical Model Review – T1DCAG members had the opportunity to hear from the Centre’s Implementation Scientist about the importance of having a socioecological model for healthcare. They provided feedback about the current model and help create a new model that is fit for purpose.
- 2025 Symposium – T1DCAG members continue to prepare to be involved in the Centre’s 2025 Research Symposium to be held in Perth, Western Australia in August with 15 members scheduled to attend.
- 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.
- Project Guidance and Advice – The T1DCAG heard from 3 researchers, including SEED Fund recipients.
Research Buddies
Research Buddies work directly alongside researchers on specific projects. They provide guidance and advice on research protocols, project design, information sheets, ethics applications, communication and study 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. The group are currently in the testing phase of the project, to ensure everything that has been identified as a need by the T1D community has been incorporated and that the Patient Portal app functionality is fit for purpose.
- 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.
- Grant applications are necessary for researchers to secure funding for projects. It is becoming increasingly common for funding organisations to request letters of support from community members to go with their application. This ensures that there is a real need for the project within the community. We continue to have very supportive Consumer Representatives providing these letters of support, with 3 applications being submitted in the past 3 months.
A Consumer Representative is an individual person who voices consumer perspectives on behalf of other consumers, albeit with a narrower view. They bring their 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.