Community Involvement in research is more than just participating in a study. It is 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.
Definition: 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 are fit for purpose.
Currently, there are:
- 14 T1D Community Advisory Group (T1DCAG) members nationally, and growing;
- 2 Management Steering Group members
- 3 Health Economic Working Group members
- 11 Reference Group members;
- 7 Research Buddies.
What have Consumer Representatives have been working on?
T1D Community Advisory Group (T1DCAG)
2025 Research Symposium
15 T1DCAG members joined the Centre’s researchers and collaborators on the 15th and 16th August in Perth, WA. It was a day and half of learning about what research is happening within the Centre, and lived experience was front and centre in every discussion.
A community panel session was held on day one, with 4 T1DCAG members sharing their experiences Questions and responses were shaped around the 6 top research priorities that were identified by the group in their earlier priority setting workshop.
The event provided an opportunity for T1DCAG members, representatives of every Australian state who meet online every second month, to come together face-to-face and build stronger connections with each other. It also provided an opportunity for researchers and collaborators to speak with people who live with T1D directly, whether they were an individual living with the condition or a parent caring for a child and from all walks of life.
T1DCAG members came away feeling heard, valued, and respected for their views. They were not only appreciative of the opportunity to attend, but also in being included in discussions that created more impact with their personal stories. Researchers and collaborators also expressed how valuable it was to hear from people with lived experience and appreciated the opportunity to understand further what it is like to live with T1D.
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 involved in the following:
- 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, when to tell and to reduce instances of stigma of living with T1D.
- DiabHQ - Progress continues in developing a data hub for clinical and research purposes as well as a Patient Portal where families and young people 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 is hoped that these resources will help these families understand and implement management strategies to support their child's health.
- Grant applications - Necessary for researchers to secure funding for projects, funding organisations are increasingly asking researchers to show how they will involve people with lived experience in their research. Often this begins with a letter of support that forms part of their application, but researchers also need to show that their proposed project has a need within the community, how they will involve lived experience and what the benefit will be to those living with the condition. Research Buddies and the T1DCAG increasingly become involved in the grant application process, reviewing the study protocol to ensure the project has a need and will create value for children and young people living with T1D.
By having people with lived experience embedded as Research Buddies within projects, from the grant application phase and right through every stage of the project, ensures any outcomes will be meaningful to children, young people and those that care for them. Whether this is in the form of new resources or the implementation of a new clinical model of care, they help make a difference.
INVOLVEMENT OPPORTUNITIES
- T1DCAG
The T1DCAG are currently looking for new members in NT, VIC, ACT and TAS, especially from rural, regional, and remote areas as well as people from culturally and linguistically diverse communities that live with or care for someone living with T1D.
- CaLD Resources Research Buddies
The team are currently looking for people with T1D lived experience from the following language backgrounds to help review these resources:
- Arabic
- Simplified Chinese
- Dari
- Vietnamese
- Somali
If you are from any of these culturally and linguistically diverse communities and would like to be involved in this project, please contact us at community@childrensdiabetesresearch.org.au.