Harnessing your voice
13 May 2024
The consumer voice is central to everything we do.
In keeping with this principle, in November 2023 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.
As part of BCNA’s commitment to improve the support we provide to people living with and beyond breast cancer, we partnered with the University of Sydney (Psycho-oncology Co-operative Research Group) to conduct national surveys of our members and Australian healthcare professionals.
We asked for your help to understand:
- emerging changes to the way people seek information and support from BCNA, especially since COVID-19.
- whether our resources are still meeting the needs of our members, including being accessible and relevant, especially for different communities and groups, such as people living with metastatic breast cancer and people living with a disability.
- how our members and health professionals perceive us and our role in the cancer sector so that we can continue to advocate for improvements to cancer care, build confidence and connection across our member networks, and support health professionals to tailor health services to the needs of each patient and their family.
The two surveys were launched in November 2023 and closed on 8 December 2023. In total, 2,512 members and 168 healthcare professionals completed the surveys.
Of the 2,512 people that responded to our call, around one third had been diagnosed in the last 12 months.
The survey included questions about BCNA’s information and support services—including our Helpline, Online Network, website, podcasts, and webcasts—and how they 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.
- 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.
In April, we presented the survey recommendations to BCNA’s Board, and the findings were also discussed at BCNA’s Think Tank 2024 – where our trained Consumer Representatives (CRs) meet to share ideas.
The recommendations will also be explored through further consultation with our network, BCNA staff and stakeholders to help inform our activities going forward.
