BCNA members and HPs shared their views on how we connect, inform, and build confidence in engaging with the cancer care system.
Breast Cancer Network Australia (BCNA)
BCNA’s Experience project | Participant Summary
Harnessing the voice of BCNA members and Australian healthcare professionals
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)
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2. People still need support long-term following their diagnosis. Nearly one-third of people reported that they still need support more than three years after their most recent diagnosis, highlighting BCNA’s role in helping people to live well with and beyond breast cancer. Similar to BCNA’s 2017 survey results, the most common topics that people reported were most important related to managing physical side effects and emotional support, including fear of recurrence or progression. We also heard that many people need more help communicating with healthcare professionals, family and friends, and work colleagues as well as managing financial impacts of treatment. People living with metastatic disease told us they are seeking more information about living well, managing pain and fatigue, and accessing new treatments. 3. People need more inclusive and tailored information and support. We heard that people value BCNA resources that are tailored to their individual and/or community needs such as using inclusive language and accessible formats. Examples of groups who are seeking more specific support include younger women (under 40 years), people living with disability such as chronic pain and neurodiversity, and people who self-identify as LGBTIQ+ or First Nations. Members and healthcare professionals both reported that information and support should be available online and in-person or hard copy to suit different communication preferences.
4. Members and healthcare professionals have high trust but low awareness about what BCNA does. Members and healthcare professionals consider BCNA resources to be high quality because they are based on evidence and are reliable. Most healthcare professionals and members believe it is most helpful to engage with BCNA resources at the point of diagnosis, but people also reflected that engaging with BCNA is beneficial across their cancer experience, including before diagnosis (such as for people with genetic risk factors) through to living with metastatic disease. Healthcare professionals play a critical role connecting people with BCNA for the first time, most commonly through a breast care nurse (see Figure 1 on the following page). The resources most used by members and healthcare professionals are My Care Kits, the My Journey App, the BCNA website and fact sheets. However, many were not aware of the full list of resources and services available from BCNA, such as video/online resources, BRECONDA (decision aide for breast reconstruction), and the BCNA Symptom Tracker. There was also low awareness by people living with metastatic disease about the availability of the ‘Hopes and Hurdles’ resources. Many healthcare professionals were not aware of BCNA’s broader role offering education and research opportunities, and only two- thirds were aware of the national Optimal Care Pathway clinical guidelines for breast cancer.
“…whenever you have a concern or need information BCNA always has a resource that you need. It gives you access to a community of others experiencing what you're experiencing; and up to date information on treatments and resources to use to navigate the many decisions you're faced with” (Respondent 112)
“I have found it hard to reach out to support groups. I think having a diversity of voices, case studies…. would be helpful” (Respondent 723)
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Figure 1: How people first connect with BCNA Figure 1: How people first connect with BCNA
Legend
10% 1% <1% 4%
15%
3% 1%
BCNA booklet/factsheet BCNA brand Event Community fundraising event Family/Friends/Carer Healthcare professional referral Other cancer/community org Other Social media Search engine Unsure Missing data
7%
3%
41%
13%
5. Our brand is strong but BCNA’s profile in the community could be improved. The surveys confirmed that BCNA’s role in the cancer and broader health sector is well recognised as improving breast cancer outcomes through advocacy and the voice of lived experience. However, people reported that its similarity with other breast cancer organisations can cause confusion about the scope of services that BCNA delivers, such as breast care nurses (through the McGrath Foundation). There were also concerns raised by some members that the pink lady branding was not inclusive of diverse breast cancer experiences.
“I would like to see a pink lady (representing early breast cancer) holding a purple balloon (representing metastatic breast cancer) - the 2 together. Not all people go through the early stage, some people's first diagnosis is metastatic.” (Respondent 2661)
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Actions we’ll be exploring:
Promotion and communication
• Increase promotion about the extensive range of BCNA information and support resources • Improve ways for people to find our resources (have a look at our refreshed website here ).
Information and support
• Explore how to improve member experiences with digital platforms that enable members to tailor information to their own preferences and needs • Establish partnerships with community organisations to better understand and respond to specific needs of diverse groups • Increase access to emotional support resources such as through BCNA's Helpline, online peer support, and fear of cancer recurrence or progression • Build awareness across healthcare professional networks about BCNA’s supportive care resources • Repeat the surveys in 2-3 years to assess increased use and access of resources by members and healthcare professionals • Work with healthcare professionals to improve their use of BCNA resources and how to deliver optimal care • Work with government to evaluate how Optimal Care Pathways support better patient care experiences and outcomes
Healthcare professional engagement
Branding and marketing
• Review the BCNA brand including options to demonstrate more diversity and to distinguish its role from other breast cancer organisations.
Research
• Establish an evaluation program to monitor and measure the impact of new and revised BCNA information and support services • Develop research partnerships to better understand the needs of: - people living with metastatic breast cancer - carers and family members - unmet support needs of diversity groups
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What we’re doing next:
We want to make sure that we prioritise our work and resources in the right way over the next 12 months to implement changes to our resources. In the next 6 months, we’ll be: • Consulting with our consumer network, staff, and stakeholders to develop an implementation plan to prioritise recommended actions. • Presenting the outcomes of this national research at upcoming conferences such as the Cancer Nurses Society of Australia’s Annual Congress. • Reviewing organisational plans and resourcing to improve how we implement and monitor our information and support services, and to ensure that new and improved resources are sustainable. In 6-12 months, we’ll be: • Exploring new partnerships to implement some of the proposed actions by building connection across the cancer and research sectors. • Engaging with peak bodies that represent healthcare professionals and diverse community groups to seek advice about how to make sure our resources are accurate, appropriate, inclusive, and safe. In the next two years, we’ll be: • Reporting back to you about how we’re progressing through our website and other member communications. • Planning a future national survey to seek your feedback on changes to our resources and services in response to this survey - and to assess the future needs of families/carers (proposed for 2026-27).
Where to find further information: • To request a copy of the full research report, please email policy@bcna.org.au . With our thanks to: • Lived Experience Advisory Panel (BCNA members) and Healthcare Professional Advisory Panel who helped to design the surveys. • Project Working Group (including BCNA consumer representatives) who helped guide the project. • All BCNA members and healthcare professionals who participated in the survey. Opportunities to continue to contribute and remain connected with BCNA: • Members can sign up to BCNA’s Review and Survey Group to receive communications about opportunities to contribute to cancer research projects and studies across Australia. • Healthcare professionals can sign up to BCNA’s Healthcare Professional News to remain updated about BCNA activities and impact and information tailored to healthcare professionals (details are available here ).
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BREAST CANCER NETWORK AUSTRALIA Level 1, 293 Camberwell Road, Camberwell, VIC 3124 helpline@bcna.org.au | bcna.org.au | 1800 500 258
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