WBCPC brings patient perspective to Community Advisory Board of EU funded project

The World Bladder Cancer Patient Coalition (WBCPC) together with our member organisation, Norwegian Bladder Cancer Society, joined the Community Advisory Board (CAB) meeting of the EU-funded project PRIME-ROSE (Precision Cancer Medicine Repurposing System Using Pragmatic Clinical Trials) that took place in Oslo, Norway on January 24-26, 2024. Jointly, both organisations shared unique experiences and needs of patients with advanced bladder cancer. The PRIME-ROSE project aims to help advanced cancer patients who have tried all standard treatments and could benefit from precision cancer medicine (PCM).

PRIME-ROSE aligns with the European Union’s cancer plans, aiming to make new cancer treatments more accessible to patients across Europe. The project uses a series of practical clinical trials to help different countries work together and share information. PRIME-ROSE will check how effective these treatments are, look at the costs and benefits, and work with different groups to help make precision cancer medicines (PCM) a regular part of cancer care.

The Community Advisory Board meetings are an opportunity to hold meaningful discussions, and bring patient community needs and perspective to researchers and others relevant stakeholders. The PRIME-ROSE CAB meeting included a dedicated workshop for patient advocates. This session focused on understanding the needs of patients with advanced cancer to help shape the clinical trials and treatments. The meeting also had presentations from European organisation for Research and Treatment of Cancer (EORTC) about existing approaches to measuring quality of life (QoL) of people with cancer. People from different backgrounds, including patients, doctors, and healthcare regulators, shared their views on measurement and use of this information.

These discussions aimed to address quality of life assessments from various viewpoints, considering the constraints of current projects and envisioning possibilities for future initiatives. The meeting concluded in formulating practical recommendations for the PRIME-ROSE project.