Aim
People living with metastatic breast cancer (MBC) have distinct and evolving information needs that are not adequately addressed by existing breast cancer resources. MBC Action Australia (MBCAA) aimed to collaborate with the MBC community to design and develop Australia’s first national mbchub to address these unmet needs.
Methods
MBCAA partnered with The Social Deck to develop the Hub using a multi-phase co-design methodology involving people living with MBC, carers, clinicians, and researchers. Three national co-design workshops, stakeholder interviews, desktop review of Australian and international resources, competitor analysis and two rounds of user testing informed the Hub's information architecture, tone and functionality. Development was guided by trauma-informed principles, accessibility standards, plain language and evidence review. A multidisciplinary Advisory Group provided ongoing governance. Data from the workshops and interviews were analysed qualitatively. Google analytics was used to report user engagement
Results
Fifty-three lived-experience consumers, three carers and twenty clinicians and researchers participated across the co-design workshops and testing. Qualitative analysis identified three themes: (1) unmet need for curated, trusted MBC-specific information; (2) difficulty navigating fragmented clinical and supportive care information and services; and (3) the need for information balancing clinical accuracy, emotional safety and lived-experience perspectives. Priority needs included practical information across the disease trajectory, symptom management, supportive care, carer resources, and service navigation. Participants emphasised that information should be evidence-informed, easy to navigate, realistic yet hopeful, and presented through a lived-experience perspective. These findings directly informed the Hub's content, navigation, tone and voice. Within five weeks of launch, the Hub attracted more than 2,000 users, averaging 2.16 pages per session, with treatment, supportive care and living with MBC the most frequently accessed topics.
Conclusions
Consumer partnership was integral to Australia's first MBChub. Early engagement data suggests the Hub is addressing important gaps in the provision of trusted, MBC-specific information.