Thank you for sharing
Your Experience
member Sue Dowe said the introduction of the CAG is an exciting and valuable step in BCNA’s evolution. “Cancer advocacy is an increasingly competitive space ... we will be focusing on immediate issues relating to diagnosis, treatments and research, and ... issues that follow such as access to care throughout Australia, and the wide range of flow on effects to families and carers, children, work, finances and the displaced sense of self to name but a few,” she said. • Respondents said BCNA’s information needs to be more tailored for specific communities, for example First Nations Peoples, those with metastatic, men with breast cancer, people living with a disability, and LGBTIQ+ people. • BCNA was seen as an organisation that improved breast cancer outcomes through advocacy and the voices of lived experience. • For some members, the pink branding did not sufficiently differentiate BCNA from other breast cancer organisations and for others the pink lady branding was considered less inclusive of diverse breast cancer experiences. We have presented the recommendations to BCNA’s Board, and the findings were also discussed at our Think Tank 2024. Read more about the Think Tank on pages 8 and 9. The findings will be explored with our Consumer Advisory Group (CAG) and Strategic Advisory Group (SAG) to help inform our activities going forward.
Cooperative Research Group at the University of Sydney (PoCOG), who helped us—along with a lived experience breast cancer group— design the survey and analyse the results. The survey aimed to find out if BCNA’s information and support services—including our Helpline, Online Network, website, podcasts, and webcasts—are meeting the needs of members. WHAT WE WERE TOLD • The majority reported being referred to BCNA by their breast care nurse. • Respondents thought BCNA information was evidence-based, clear, easy to understand, relevant and trusted. • People reported some of their information needs were not met, including management of side effects, assistance with emotional impact, managing fear of recurrence, and navigating a new normal after diagnosis. • A large number said they were not aware of the full range of BCNA’s information and services.
W e have further strengthened BCNA’s approach to working with consumers with the formation of our new Consumer Advisory Group (CAG). BCNA’s CAG is made up of seven dedicated Consumer Representatives (CRs) from our Seat at The Table (SATT) program, and our CEO Kirsten Pilatti. They bring their skills, experience and diverse consumer perspectives T he consumer voice we asked members affected by breast cancer and health professionals about their view on us and our role in connecting, informing, and building confidence in engaging with the cancer care system. Of the 2,512 people that responded to our call, around one third had been diagnosed in the last 12 months. We conducted this survey in partnership with Psycho-oncology Sharon Oakley and Kate Keogh Murray—CR’s involved in co-design of member survey is central to everything we do. In keeping with this principle, in November 2023
OUR NEW CONSUMER ADVISORY GROUP
together to enable a strategic consumer-centred view for BCNA across the organisation’s strategies, capabilities, practices, processes and systems to support delivery of our purpose. Kirsten said our first CAG represents a pivotal milestone in BCNA’s journey. “By embedding the consumer perspective into BCNA’s organisational structure, BCNA is reinforcing its commitment to being led by and harnessing the consumer lived experience,” she said. CAG
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bcna.org.au
Issue 97 | April 2024
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