AN OUNCE OF PREVENTION: THE IMPACT OF EARLY CONSUMER ENGAGEMENT ON THE MELBOURNE GENOMICS HEALTH ALLIANCE isqua2017.02e0086
Genomic medicine is a powerful tool that can help patients by improving the diagnosis, treatment and prevention of disease. The Melbourne Genomics Health Alliance was established to address the challenge of introducing the processes and systems to support the appropriate use of genomic sequencing into clinical care in the state of Victoria, Australia. Seven founding members of the Alliance came together in 2013 with a shared interest in bringing genomics into healthcare to benefit patients. The Victorian Government supported extension of the project with an allocation of funding.
The members recognised that community advice and partnership/co-design were vital to this project and established a Community Advisory Group (CAG), within weeks of the its founding, making it one of the world's first community-based groups to advise a major genomics' project. The CAG guided input from patients and the community in every aspect of the demonstration project work.
The Alliance is building a proof-of-concept system comprising the infrastructure, software, policies and procedures for genomic sequencing in clinical care, encompassing the full pathway from counselling and consent to return of results and the challenges of additional findings. The CAG continues in its role into the next 5-year phase of the project involving additional public hospitals.
Alliance: to facilitate the integration of genomic sequencing into clinical practice in Victoria.
Community Advisory Group: to provide a platform for broad community input for use by the Alliance, and as a source of informed community members to participate in working groups, selection panels, discussions and events.