Strengthening your voice: how to advocate with purpose and power

On Advocates Day at the World Bladder Cancer Patient Forum 2025 in Brussels, participants joined an interactive workshop titled “Strengthening your voice: how to advocate with purpose and power.” Led by Niccola Scocchi, Head of the Brussels Office, and Alex King, Head of Health at Fourtold, the session explored the key principles of effective advocacy and how patient advocates can make their voices heard with clarity and impact.

The workshop opened with a discussion on what advocacy means and why it matters. Participants shared their own definitions, from “asking for change” to “turning awareness into action”, before exploring how advocacy combines strategic communication, policy understanding, and coalition-building to drive meaningful progress. Niccola and Alex guided attendees through the essential steps of developing a successful advocacy strategy, from mapping stakeholders and monitoring policy developments to crafting clear messages and measuring impact. They highlighted the importance of defining realistic objectives, tailoring messages to different audiences, and distinguishing between activity and impact.

The second part of the session brought these ideas to life. Participants worked in groups to design advocacy strategies around a shared challenge: ensuring that bladder cancer is included in new national cancer plans. Each group presented their approach, drawing from their country contexts and experiences.

• In the Spanish group, participants faced the challenge of limited access to national decision-makers and a complex split between central and regional authorities. Their strategy focused on building strong alliances with professional associations, research bodies, and industry partners to amplify their voice. Through a coordinated, multi-channel communication campaign — supported by a well-known public ambassador — they aimed to make bladder cancer visible at the highest policy level.
• The Australian group centred their advocacy on early diagnosis. Their plan combined hard data with human stories: collecting statistics on incidence, mortality, and treatment costs to demonstrate the economic benefits of early detection, while sharing patient and clinician testimonials to bring the message to life. With social media and press outreach, their campaign would make a strong and evidence-based case for policy change.
• The Dutch group highlighted the importance of using existing national structures to influence policy. Their plan began with engaging the national Patient Federation to present the case for inclusion, followed by outreach to urological and oncological societies and hospital partners. Together, these allies would co-develop a manifesto to present to the government, ensuring that bladder cancer remains a visible and coordinated priority across the health system.
• The UK group proposed a comprehensive, coalition-based strategy to secure bladder cancer’s inclusion in the upcoming national cancer plan. Their approach involved uniting patient organisations, healthcare professionals, and think tanks around a jointly authored policy paper outlining the burden of disease, health economics, and clear recommendations for action. They planned to share it with government and NHS decision-makers, backed by a potential public petition to demonstrate widespread support. A key proposal was to move cystoscopy services into community diagnostic centres, improving access and reducing costs for the healthcare system.

The group presentations captured the essence of the workshop: that effective advocacy requires focus, collaboration, and creativity. As one participant put it, “Keep it simple and always think from the end.” This hands-on session equipped participants with practical tools and renewed confidence to strengthen their advocacy efforts locally and globally, ensuring that the voices of bladder cancer patients continue to shape the policies that affect their lives.