10321-NQPC-9 Bridging Patient Voices in the Field of Brain Tumors: JBTA Initiatives (2023-2025)

Abstract Background The Japan Brain Tumor Alliance (JBTA), established in 2006, is a non-profit organization supporting brain tumor patients and their families. JBTA aims to close the communication gap between patients and healthcare professionals by collecting and sharing patient-centered insights across Japan. Objective To summarize outcomes from JBTA’s patient-engagement activities conducted between 2023 and 2025, and to highlight emerging concerns in the neuro-oncology field identified through ongoing dialogues with patients and healthcare stakeholders. Methods Monthly patient meetings: qualitative and quantitative analysis of discussion logs to extract unmet needs Clinical research involvement: review of ongoing projects in which patient representatives contributed feedback Supportive care webinars: post-session surveys to assess satisfaction and perceived learning International collaboration: review of output from joint projects including the Asia Pacific Brain Tumor Alliance (APBTA), based on literature and meeting records Results Meeting analyses identified four priority areas of unmet need: symptom relief, access to information, support for employment/schooling, and navigation of social resources Patient representatives provided feedback to select research teams, contributing to greater sensitivity to patient priorities in design and communication Webinars on clinical and supportive care topics received strong participation, with most respondents reporting improved understanding JBTA co-authored an international publication on patient advocacy (PMID: 39917767), helping position Japan within global advocacy efforts and APBTA dialogue Recent patient discussions have increasingly brought forward neuro-oncology-specific challenges such as brain tumor-related epilepsy (BTRE), cognitive symptoms, and treatment-related sequelae, prompting early-stage engagement with relevant specialists Conclusion JBTA’s multi-layered activities offer a practical foundation for incorporating patient perspectives into care, research, and policy in neuro-oncology. Attention to emerging patient-expressed concerns, especially those involving neurological function and long-term impact, will be essential in fostering more responsive and collaborative approaches across the field.