Meaningful patient engagement in action

At the World Bladder Cancer Patient Forum 2025, the session “Meaningful patient engagement in action” brought together a diverse panel to explore how patient voices can shape care, research, and decision-making, not as a symbolic gesture, but as a shared responsibility across all stakeholders.

Moderated by Alex Filicevas, Executive Director of the World Bladder Cancer Patient Coalition, the discussion featured Christine La Rose, bladder cancer survivor and Patient Support and Advisory Leader at BEAT Bladder Cancer Australia; Aysem Oeznel, Patient Partnership Leader at Roche; and Maddalena Benivento, representing The Synergist and the Patient Focused Medicines Development (PFMD) initiative.

Alex opened the session by presenting Be Clear, WBCPC’s first EU-funded project, developed with the European Association of Urology and other European partners. The three-year initiative focuses on improving bladder cancer health literacy across Europe through shared decision-making between patients and healthcare professionals, co-developing educational materials in multiple languages and setting a blueprint for future EU-wide literacy efforts.

From there, the conversation turned to what meaningful engagement really looks like.

“Patients bring humanity into every process,” said La Rose, sharing her personal journey from diagnosis at 49 to advocacy leadership in Australia. Through BEAT Bladder Cancer Australia’s national support programmes, patients now have access to peer-to-peer mentoring, monthly support groups, and educational tools that empower them to be active participants in their care. “Support can’t wait,” she explained. “When a patient reaches out, whether it’s for information or someone to talk to, that becomes our top priority.”

Representing the industry perspective, Aysem described how patient partnership at Roche has evolved from a “check-the-box” approach to end-to-end involvement, from early clinical trial design through to access and launch. “We’re not just external advocates anymore. We’re internal advocates too,” she said, emphasising the role of patient experts in steering committees and co-developing study protocols. Her advice to advocates: “Don’t wait to be invited, invite yourself. Be proactive and make your voice heard.”

Maddalen highlighted practical frameworks for engagement developed through PFMD, including quality criteria, remuneration standards, and sustainability guidelines that ensure patients are not only consulted but remain partners throughout the project lifecycle. “Real engagement has an outcome,” she noted. “It’s about long-term partnership, not one-time consultation.”

The panel agreed that patient engagement must go beyond inclusion, it must influence. From shaping policy to improving trial design, education, and support systems, the patient voice adds essential insight into what truly matters in care and quality of life.