Real impact: Case studies from BCNA’s consumer involvement

When people who have had breast cancer are involved in research and decision-making, the results are more meaningful, inclusive and helpful. 

At BCNA, we support this through our Seat at the Table Consumer Representatives and our Review & Survey Group. Below are some real examples of how our BCNA lived experienced advocates have made a difference — in research, in health services, and in government policy.

Case Study: EMPOWER-SMS – Supporting people after treatment 

A co-designed text message program to support people after active breast cancer treatment. The 6-month program delivers supportive messages about how to stay well, manage side effects and endocrine (anti-hormone) therapy medication, and connect to free services. Messages focused on health, wellbeing and reminders about medication. 

BCNA consumers were an active part of the research team through the project’s steering committee. They helped design the clinical trial and choose the right surveys to use.

The trial won 2022 Australian Clinical Trials Alliance Trial of the Year for Consumer Involvement. It was also cited by the World Health Organisation as evidence for using digital health interventions to support women’s health.

How BCNA consumers were involved 

• helped design the content and tone of the text messages 
• advised on what support people most needed after treatment 
• gave feedback during and after the trial. 

Impact 

People who got the messages were more likely to take their medication 

• 91% said they found the program useful 
• the program is now being trialled in GP clinics across Australia.

Case Study: Out with Cancer – Making care safer for LGBTIQ+ people 

A national research project looking at the experiences of LGBTIQ+ people with cancer, their carers and healthcare providers. 

How BCNA consumers were involved 

• LGBTIQ+ Consumer Representatives helped design surveys and interview questions 
• Consumers helped analyse the results and co-wrote resources 
• Findings shaped new training for health professionals 

Impact 

• Found high rates of distress among LGBTIQ+ people with cancer 
• Led to more inclusive information and policy guidelines 
• Helped create new support resources with BCNA and partner organisations 

Case Study: Government partnership – Better support for rural and metastatic communities 

A federal funding partnership that helps BCNA deliver information and support for people in rural and regional areas, and those with metastatic breast cancer. 

How BCNA consumers were involved 

• Shared challenges they faced in accessing care and services 
• Helped design regional events and support resources 
• Advised on how to reach people who may feel isolated 

Impact 

• Led to more regional forums and online events 
• Improved access to My Care Kits and other resources 
• Helped shape BCNA’s national advocacy priorities