Every VoiceCAN: the journey and contributions of a grassroots regional cancer advisory network

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. 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. 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. Not applicable. There are benefits to taking part in cancer clinical trials that test new treatments in humans. Despite those benefits, not many people in regional and rural Australia take part in clinical trials. One organisation began a large five-year project to try and improve access to cancer clinical trials in regional and rural Victoria (Australia), called ReViTALISE. One woman who had experience of cancer and was working on the project saw an opportunity to support other people with experience of cancer who were also working on the project, while also helping the project and others like it. With the support of the project, she started a consumer advisory group called Every Voice Consumer Advisory Network (Every VoiceCAN). Groups of consumers providing input into projects and organisations are not unusual. However, many of them are brought together by the organisation with a specific task in mind. Every VoiceCAN is different in that respect. It was developed by consumers, for consumers, and group members get involved in multiple projects across a lot of organisations. This article presents the journey of the group in the words of the founding chair and co-chair. Allowing consumer representatives to use their own style of writing, rather than the specific language usually seen in academic publications, can help them feel they have just as much power and important knowledge as academics and clinicians.