WBCPC shares patient-led research expertise at WECAN EBA Workshop

The World Bladder Cancer Patient Coalition (WBCPC) actively participated in the WECAN Evidence-Based Advocacy Training Workshop in Munich, Germany, on January 18-19, 2024. This event is part of the WECAN training programme to enhance the knowledge and capacity of patient advocates to conduct patient-led research.

WECAN – Working Group of European Cancer Advocacy Network’s objective is to develop a strong community of well-trained patient advocates. Alex Filicevas, Executive Director of WBCPC, co-led two sessions on developing patient survey questionnaires and poster development together with colleagues from EORTC, ALAN Network, IKCC and MPN Europe.

During these sessions, the landmark WBCPC project – Global Bladder Cancer Patient & Carer Survey, served as an example illustrating the role of this research in understanding patient experiences, identifying unmet needs and informing pathways for advocacy.

The workshop’s agenda included hands-on sessions, where participants actively engaged in analysing the survey results. This exercise aimed to simulate the real-world scenario of presenting findings at a scientific congress, thus honing the participants’ skills in evidence-based advocacy. By examining and extracting critical insights from the survey, participants learned the art of converting data into compelling narratives for policy change and public awareness.

WECAN EBA Workshop trainees engaged in practical exercises, analysing survey results to learn how to use data in advocacy effectively. They had opportunities to reflect on their respective pathologies to explore potential research questions for their future projects. Theodoros Yfantis, Project Coordinator at WBCPC, attended as a trainee, joining over 20 other advocates from Europe and beyond, highlighting both WBCPC and WECAN’s commitment to collaborative learning.

The Global Bladder Cancer & Patient Survey, which included over 65 questions, focused on various aspects of the bladder cancer patient experience, with results emphasising the importance of patient-centred data in advocacy.

The workshop exemplified the need for evidence-base to support cancer patient advocacy. It involves targeted efforts based on robust patient data and effectively communicating these needs to stakeholders. The Bladder Cancer Patient & Carer Survey Report, a significant project by WBCPC, provides extensive international analysis of bladder cancer patient experiences.