How consumers can strengthen the design and implementation of genomic care services
It’s well established that consumer involvement in healthcare can lead to safer and better health services. Genomics, however, has unique and uncommon features that make consumer involvement both necessary and challenging.
Consumer involvement was central to the work of Melbourne Genomics since its inception. A Community Advisory Group advised on every stage of programming since 2014, and consumer panels were established to bring lived-experience perspectives to a range of clinical projects.
But how has consumer involvement strengthened genomic care? And what can health services learn from this experience?
A resource for health services
In 2024, the Community Advisory Group (CAG) decided to produce a resource for health services, containing practical advice on consumer involvement. The resource would focus on genomics, highlighting areas where consumer involvement adds value, and recommendations from consumers about how to improve their involvement.
Content for the resource came from two collaborative workshops facilitated by Stacey Ong and Chriselle Hickerton. The workshops included members of the CAG and consumer panels, as well as other consumer advisors.
Making a difference: The value of consumer involvement in genomic medicine was finalised in 2025.
The resource is intended for clinicians and health service providers to:
- learn about the value of consumer engagement in genomic care, from consumers themselves
- inspire them to engage consumers respectfully and meaningfully
- apply lessons to their own clinical and research work
There are 21 practical recommendations – ranging from initials mindsets and approaches, to power dynamics, feedback, remuneration, language and inclusion.
“I have listened, learned and seen firsthand, how consumers with lived experience have made significant contributions to all aspects of genomic medicine – from providing feedback on patient information and communication methods, to championing changes to clinician education, and advocating for consumer involvement in genomics to be strengthening and embedded into policy and health services.”
Kellie-Ann Jolly, Chair of the Community Advisory Group