Highlighting the importance of community involvement

The article:

‘Living between two worlds: lessons for community involvement,’ published in the March 2024 issue of The Lancet Diabetes and Endocrinology, recognises that people living with diabetes are truly the experts in their condition.

It highlights the importance of listening to people with diabetes. Best practice community engagement will lead to improved diabetes research and health services.

The article was co-authored by a group of Australians with both lived and professional experience of diabetes, including Diabetes Victoria staff Meaghan Read and Dr Elizabeth Holmes-Truscott.
“Genuine community involvement is essential for improving diabetes health services, research, and advocacy,” says Dr Holmes-Truscott, Deputy Director at The Australian Centre for Behavioural Research in Diabetes.

“While several guidelines and frameworks exist, the article presents a unique perspective from a group who have led and been participants in community involvement activities.

“It was written by people with lived and professional experience of diabetes, with representation across different types of diabetes as well as research, health care, and advocacy professions.

“Our collective experience informs recommendations for enhancing community involvement practices, both for those seeking to involve community, as well as people with diabetes getting involved.”

The Lancet Diabetes and Endocrinology is the world-leading diabetes, endocrinology, and metabolism journal, ranking first out of 145 endocrinology and metabolism journals globally.

“It is exciting for the authors and the organisations involved to have this published in such a reputable journal,” says Ms Read, Community Engagement Lead at Diabetes Victoria.

“It is also exciting for the diabetes community that community engagement and involvement is gaining momentum.

“Community engagement is a priority for us at Diabetes Victoria and we hope this article will support our ongoing work in this space.

The article reflects on the group’s common experiences and makes recommendations for more effective community involvement.
Recommendations for organisations include:

• Ensure diversity in numbers and perspectives,
• Recognise the value of lived experience by offering appropriate credit and support,
• Clearly communicate expectations, feedback and outcomes,
• Create a safe environment by taking steps to reduce diabetes stigma and discrimination.

Recommendations for members of the diabetes community include:

• Know that disclosure and advocacy is your choice,
• Set boundaries to reduce the risk of burnout,
• Acknowledge your own biases,
• Expect organisations to create a safe environment, offer clear and consistent communication and support.

“We hope the recommendations in this article will help other organisations begin or continue their community engagement practices,” Ms Read says.

“We hope it also empowers people with diabetes to engage with organisations as representatives for the community.”