A grassroots community advisory group enabled Melbourne Genomics to address complex issues like privacy, informed consent, patient experience and the re-use of genomic data.
A paper published in Research Involvement and Engagement provides valuable insights for healthcare services looking to deepen their community engagement.
Written by members of Melbourne Genomics’ Community Advisory Group (CAG), it details how the CAG was able to influence a multi-year, multifaceted program.
Melbourne Genomics Health Alliance set up its CAG in 2013, very soon after the Alliance itself was established. The purpose of the Alliance was to steer genomics into healthcare; the role of the CAG was to bring a strong community voice to this effort.
“In large complex clinical studies, in which multiple partner organisations are involved, we tend to forget that our joint effort is not just scientific research or making a new test available; it is finding actual medical solutions for patients,” says lead author and CAG member Dr Janney Wale. “The work of the CAG provided a constant reminder of this goal.”
The CAG’s contribution deepened as the program evolved: understanding the views and experiences of patients undergoing genomic sequencing; informing patient materials, consent processes and data sharing policies; recommending community engagement approaches for individual projects; and upskilling other patient advocates.
CAG members were active community advocates, some with lived experience of genetic conditions. This was one factor that contributed to the group’s impact. Another was the strong relationship between the CAG and the program team, and their shared commitment to consumer involvement.
In 2017, the CAG was lauded in the Minister for Health Volunteer Awards, winning the ‘Outstanding Achievement by a Volunteer – Better Care Victoria Innovation Award’.
In 2021, the CAG and the program team co-designed a community engagement framework to guide the last four years of the Alliance’s work. This will help ensure a consistent approach to engagement, and a greater diversity of perspectives and community experiences.