Community Involvement in the Centre current snapshot

Our current Community Involvement snapshot

We were delighted to host the Centre's annual Community Forum: A New Era in Type 1 Diabetes during National Diabetes Week. The community - including a range of families involved in the Centre - joined researchers, clinicians and supporters to learn about the latest in diabetes care and early-stage T1D prevention. A highlight was hearing from research participants who shared their experience in clinical and technology trials.

T1D Community Advisory Group (T1DCAG)

Our T1DCAG meets online every two months to provide advice on research projects and help shape the Centre's future research priorities.

Recent highlights

• Five members of our T1D Community Advisory Group (T1DCAG) attended this year’s Australasian Diabetes Congress in Melbourne, sharing their expertise and lived experience across a range of presentations and discussions. We were delighted to see Rachelle Ward, Leah Pascoe, Duncan Read and Lia Goodwin contribute to the program, with presentations and posters spanning improving outcomes for children with diabetes, lived experience and consumer-led practice, rural diabetes care, peer support, diabetes mental health and supporting children with T1D in early childhood education and care. It was wonderful to hear about their experiences at the Congress and the valuable contribution they made to advancing diabetes care and research. (See photos to the left).
• Our Community Advisory Group members have been working closely with researchers in exploring resources to better understand the full health, economic, and social impact of type 1 diabetes on patients and families.
• Our members had a powerful conversation about the 'Early Childhood Education and Care Experiences of Australian Families Living with Type 1 Diabetes: A Community-Driven Study' with the research team. Insights were shared to help with distribution and thinking moving forward with the project. 

DiabHQ Phase 2 Consumer Reference Group

The DiabHQ patient portal is an App that includes a range of functions to support diabetes management including, access to clinical records and pathology results, appointment reminders and details, and an extensive library of validated resources. Community members are currently working with the team to refine and prioritise features of the App and guide development of the Clinician Portal that will enable information to be shared between families & clinicians to allow more comprehensive and care.

Research Buddies in Action

Research Buddies work alongside researchers throughout a project, providing lived experience to improve study design, participant information, recruitment and communication.

Over the past few months, our research buddies have been supporting:

• N-PARTI - This project is working with consumers, healthcare providers and implementation specialists to improve care in line with ‘gold-standard’ guidelines and bridge the gap between research and practice in paediatric healthcare.
• PERSIST Study – aims to explore young people with T1Ds’ experiences of suicidal and/or self-injurious thoughts and behaviours, from onset and ongoing experiences to help-seeking.
• Supports for Eating and Body Image Concerns - Progress in underway on a new program of work aimed at improving the model of care surrounding eating and body image concerns for young people living with Type 1 Diabetes. Research buddies have been meeting regularly to contribute to the first project, which will invite young adults to share their experiences and ideas to help improve care.
• Grant applications - Research Buddies are ongoingly helping researchers strengthen funding applications by ensuring projects reflect community priorities and demonstrate meaningful lived experience involvement.

Want to get involved at the Centre?

Whether you'd like to join an advisory group, become a Research Buddy or simply learn more, we'd love to hear from you.

Contact Kathryn Stewart Community Involvement Coordinator: Kathryn.stewart@thekids.org.au