Bringing the Patient Voice to the IBCG Annual Retreat

For the second year in a row, WBCPC participated in the International Bladder Cancer Group (IBCG) Annual Retreat in Houston, Texas, USA. At this meeting, global experts came together to advance consensus on clinical practice, toxicity grading, biomarkers, patient-reported outcomes, and future directions in bladder cancer care.

Bringing the international patient perspective, WBCPC Executive Director Alex Filicevas joined a panel discussion alongside our USA colleagues from BCAN to share reflections on the discussions held throughout the meeting.

During the discussion about considerations from a patient perspective three key messages were highlighted, amongst others:

• Biomarkers: Patients need clarity on which tests are investigational, and which are ready for clinical use, alongside equitable access and sufficient information to support shared decision making.
• Toxicity: For patients, the cause of treatment toxicity or side effects matters less than recognition and action. Persistent moderate symptoms can disrupt daily life and must be graded accordingly whilst being addressed with care.
• Cultural and international considerations: Consensus guidance must reflect diverse health system realities, balancing ideal standards with minimum essential care or alternative options, and embedding patient values alongside clinical criteria.

In the final session on patient-reported outcomes, WBCPC welcomed the IBCG initiative to develop a comprehensive new tool specific for bladder cancer. Alex Filicevas called for this work to be tailored to factors such as geography, culture, and gender. This will help ensure the tool is globally relevant and captures what truly matters to patients. WBCPC expressed readiness to support this effort, recognising IBCG’s unique role in driving such global initiative.

WBCPC also announced the launch of the new Scientific Advisory Board, chaired by Dr Ashish Kamat. This Board will provide scientific expertise to guide WBCPC’s work, while serving as a vital link to the international bladder cancer research and clinical community.

WBCPC looks forward to deepening collaboration with the International Bladder Cancer Group and colleagues worldwide to advance bladder cancer research and ensure that patient perspectives continue to shape the future of care.