Abstract / Summary
Background: Despite the benefits associated with participation in cancer clinical trials, participation rates in rural, regional and remote Victoria (Australia) are low. To address this issue, an $18.6 million funded project called ReViTALISE was established. One consumer representative for the project saw a need to establish a supportive network of consumers, and to provide a voice for rural, regional and remote people with lived experience of cancer. Many consumer advisory groups are established by organisations (top-down model) when the need arises and often focus on discrete projects. The Every Voice Consumer Advisory Network was established from the bottom up with its members enjoying the freedom to be involved in projects that align with their values. This case study commentary describes the journey of the Every Voice Consumer Advisory Network, their contributions to date, and their future directions. It also highlights what happens when a consumer advisory network is empowered to set the agenda. It is often difficult to discern the contribution of consumer co-authors in academic texts through editing that complies with the stylistic expectations and conventions of academia. This comes at the cost of disempowering consumer co-authors. To ensure power sharing, the text presented here is predominantly in the original form as written by the chair and co-chair of the group.
Main text: Members of the network represent five distinct regional health districts. They are providing their input from a lived cancer experience perspective to 18 separate organisations and programs across Victoria, Australia. Through the funded administrative support of the project they are embedded within, they are able to connect to complementary programs outside of the organisation. This has led to unintended and beneficial connections for the project. The Every Voice Consumer Advisory Network is investigating options to ensure its sustainability beyond the current funding period.
Conclusion: Every Voice Consumer Advisory Network has carved out a niche position of rural and regional voices of lived cancer experience in projects across the state. With the administrative support of a funded project office, the group has engaged with multiple organisations and projects, building unexpected connections for the project. This approach may benefit other organisations considering embedding consumer engagement into their own work.
Clinical trial number: Not applicable.