What is the BCNA Experience project?
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. Currently BCNA has around 180,000 members who have connected with us in some way - including using our information and support services. 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 BCNA's role in the cancer sector is perceived so that we can continue to advocate for improvements to cancer care, build confidence and connection across our member networks, and support healthcare professionals to tailor healthcare services to the needs of each patient and their family. The two surveys were launched on 6 November 2023 and closed on 8 December 2023. In total, 2,512 members and 168 healthcare professionals completed the surveys.
What we heard from you:
1. Membership profile is similar
4. Members & healthcare professionals have high trust but low awareness
5. Brand is strong but profile in community could be improved
3. Priority groups seeking more tailored information & support
2. Unmet supportive care needs continue long term
1. The profile of people engaging with BCNA has not significantly changed since the last survey in 2017. Most members who completed the survey were women aged between 50-69 years who live in metropolitan areas. People reported a range of diagnoses including early breast cancer (56%), ductal cancer in situ (DCIS) or lobular cancer in situ (LCIS) (26%), and 10% metastatic breast cancer. Around one-third of members had received a diagnosis in the last 12 months and 13% had a previous breast cancer diagnosis. We heard from different member groups including over 30% from regional areas, 23% from culturally and linguistically diverse communities and 13% living with a disability. Less than 6% of people in total reported living in rural and remote areas, self-identified as LGBTIQ+ or First Nations, or were men.
“I know there is work being done in the metastatic [breast cancer] area. I think there needs to be more representation and work as many of us plan to live a long time! It's a hard journey, so support and research in this area is vital.” (Respondent 123)
BCNA’s Experience project | Participant Summary
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