Community Involvement in the Centre - update

Community Involvement in the Centre – Update

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 https://diabetes.thekids.org.au/information-hub/resources/community-involvement-frameworks-and-guidelines/ 

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.

Sharing the Voice of Lived Experience at PSAD and at the Diabetes National Summit at Parliament House

Two of our T1DCAG members, Duncan Read and Lead Pascoe, recently attended the Psycho-Social Aspects of Diabetes (PSAD) Study Group 30th Annual Scientific Meeting, held on 17–19th February in Geelong, Australia.  Duncan and Leah were recipients of the PSAD Axel Hirsch Travel Award, which supports people with lived experience of diabetes to attend the annual meeting.

A recent article published by the Australian Centre for Behavioural Research in Diabetes shared Key insights of the award recipients about their experiences of the PSAD meeting. The article can be accessed here https://acbrd.org.au/2026/03/27/australians-living-with-diabetes-reflect-on-the-2026-psad/

Another one of our T1DCAG members, Rachelle Ward, recently joined Centre Co-director Liz Davis and Principal Investigator Tony Huynh at the National Diabetes Summit held at Parliament House in Canberra.

They were invited as leaders and decision‑makers from the diabetes and broader health ecosystem, (including people living with diabetes, policymakers, clinicians, service providers, researchers, and industry partners) to address the increasing impact of diabetes on Australians and accelerate practical solutions to one of the nation’s most pressing health challenges. 

Involvement Opportunities 

There are several avenues for community members to be involved in the work of the Centre.  This may be joining our Community Advisory group, sitting on one of the Centres scientific working groups or through focused input into a specific research project as a “research buddy”.

If you are interested to hear more please contact us on community@childrensdiabetesresearch.org.au. 

Research Buddies

Research Buddies work directly alongside researchers on specific projects. They provide guidance and advice on project specific design and materials such as research protocols, project design, information sheets, ethics applications, communication, and study recruitment.

Recent research projects where research buddies are involved include;

• The National Paediatric Applied Research Translation Initiative (N-PARTI).

This project is working with GPs to improve care in line with ‘gold-standard’ guidelines and efficiently bridge the gap between research and practice in paediatric healthcare. N-PARTI will harness the expertise of consumers, healthcare providers and implementation specialists to improve paediatric health outcomes by implementing a robust methodology to scale up, sustain change, and build translational capacity across Australian healthcare.

• Addressing the Missing Middle: Co-designing Stepped Care Approaches for Young People with Type 1 Diabetes and Eating Concerns in Western Australia.

This work tackles the urgent gap in care for young Western Australians living with type 1 diabetes (T1D) who are at heightened risk of developing eating disorders.  Leveraging WA’s integrated paediatric diabetes infrastructure and new screening initiatives at Perth Children’s Hospital, the project will co-design comprehensive care pathways with youth, families, and clinicians—focusing on identifying early warning signs, understanding family needs, and equipping healthcare teams to better support youth.

• DiabHQ phase 2.

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.

T1DCAG (T1D Community Advisory Group)

The T1DCAG is group of passionate community members who meet every 2 months online to connect with our researchers and provide input into specific research projects and the broader research priorities of the Centre.  We are currently looking for new members.  

If you meet the following criteria and are interested in joining our passionate group, please contact the Community Involvement Coordinator at community@childrensdiabetesresearch.org.au

• Live in a rural, regional, or remote area in WA, NT, VIC, ACT or TAS; and/or
• Belong to a culturally and linguistically diverse community; and
• You or your child live with T1D.