Background
Survivorship is a strong element of Victoria’s Cancer Action Plan 2008-2011 and Government has funded projects to further develop survivorship knowledge. BreaCan partnered with The Royal Women’s Hospital, Western Health, The Royal Melbourne Hospital & Inner North West Melbourne Medicare Local to implement and evaluate a Survivorship Program for Women Completing Definitive Breast Cancer Treatment. BreaCan committed to sourcing and supporting consumer involvement from the initial stages of this project through a range of activities.
Methodology
1. Hosting a consumer consultation workshop involving 12 women who have experienced breast cancer. The aim of the workshop was to inform women about the project and to seek their ideas and suggestions about the various components of the project including:
• key needs as identified by the women and suggestions for how the transition through to the end of active treatment could be improved
• review and feedback of screening tools
• review and feedback of the draft survivorship care plan and treatment summary
• discussion of useful links to community services
Key personnel from the Project Working Group attended including BCNs, a surgeon and GP. The establishment of this collegiate atmosphere has characterised the collaborative process between consumers and providers that has been a unique feature of this project.
2. Talking to consumers, particularly focussing on gaps in information and how best to address these.
3. Active consumer representation on the Project Working Group
4. Project communication and feedback to consumers through regular volunteer newsletters and more broadly to 2,500 service users through quarterly “What News” updates.
Conclusion
The perspectives of women who have experienced breast cancer have been integral to the development of this project and BreaCan has been well placed to facilitate the meaningful participation of consumers throughout the project’s planning, implementation and evaluation activities. The project will increase care co-ordination between acute and community based services.