Community involvement

Making genomic medicine accessible includes:

• seeking patient and community perspectives to inform implementation
• identifying people eligible for testing and removing barriers to access
• providing information in people’s preferred languages and formats
• working in partnership with community groups and advocates

Melbourne Genomics put consumers at the centre of our clinical projects from 2016-2020, guided by our Community Advisory Group. In our final program, we will engage with a broader range of communities across the state.

The voices of First Nations peoples, regional Victorians, culturally and linguistically diverse communities, people living with disabilities, and consumer advocacy groups will continue to guide the provision of genomic medicine, long after our program has concluded.

Our award-winning Community Advisory Group was established just weeks after Melbourne Genomics was formed in 2013. It was one of the world’s first community groups to advise on the clinical implementation of genomics.

The CAG advises on community engagement for each of our projects: when it is needed, how to approach it, and whose voices must be heard.

Its members are champions of consumer rights in healthcare. They contribute to multiple boards, advisory bodies, and support groups for people living with genetic conditions.

Their collective contribution has:

• championed the role of consumer experience in genomic medicine
• influenced research on the perspectives of people undergoing genomic sequencing
• presented a workshop for community advocates working in healthcare
• informed the development of community-facing materials
• contributed to the development of genomic information systems
• shaped policies, procedures and planning
• influenced how our work is evaluated

The CAG won the Outstanding Achievement: Better Care Victoria Innovation Award in the 2017 Minister for Health Volunteer Awards.

A study on their impact was published in Research Engagement and Involvement in 2021.