Understanding the experiences of those living with a chronic condition such as type 1 diabetes (T1D) has been the topic of conversation throughout the medical research community over the last decade or so. However, developing and implementing a strong community involvement strategy has been less forthcoming as researchers battle with budget constraints. There just hasn’t been enough money or time to support community involvement authentically in research projects, not only in Australia, but also globally.
With the Centre’s aim of improving health outcomes for all children and young people living with T1D and their families (consumers), it has become strongly evident that it is necessary for them to be consulted with and included in decision-making processes when it relates to their own health care. Without understanding the real-life experiences of people living with T1D, the investigation of new treatments and better disease management will not be successful in delivering better life outcomes.
That’s why, in its first year of operation, the Rio Tinto Children's Diabetes Centre developed and published a Community Involvement Framework and Community Involvement Guidelines based on the NHMRC Statement on Community Involvement and The Kids Research Institute Australia's own Community Engagement framework for how researchers should involve consumers and community in their projects.
Developing these strategic documents and a Stakeholder and Community Involvement Plan that is specific to involving the T1D community across Australia and received $100,000 in funding, has the Centre ahead of its industry peers.
With funding support from Rio Tinto and JDRF Australia, the Rio Tinto Children’s Diabetes Centre has been fortunate to engage a Community Involvement Coordinator with T1D lived-experience, dedicated to ensuring the community’s voice is heard and considered throughout the life-cycle of a research project and are embedded in the Centre’s governance structure. Something that has never been done before.
The Framework’s Principles and Standards provide the expectation that all researchers and collaborators working with the Centre will involve those living with T1D, their families, their carers and their communities in their projects. The Guidelines provide a supporting foundation in how and when to involve authentically and the Plan provides the tactical pathway of who and how to reach the Australian T1D community and those who have a vested interest in our research.
If you are a researcher or collaborator with our Centre and need advice on how to involve the community in your project, or you live with or care for someone living with T1D and want to be involved in our research, reach out to our Community Involvement Coordinator today community@childrensdiabetesresearch.org.au.