2025 Volume 42 Issue 3 Pages 366-368
In recent years, the concept of Patient and Public Involvement (PPI) has gained increasing attention in medical research. PPI refers to the active engagement of patients, their families, and the public in research planning, implementation, and evaluation to improve healthcare and treatment development. In Japan, the Pharmaceuticals and Medical Devices Agency (PMDA) established a PPI working group in 2017, and the Japan Agency for Medical Research and Development (AMED) began requiring PPI statements in research proposals in 2019. PPI promotes collaboration between researchers and patients as equal partners. Unlike traditional approaches where research is conducted “for” or “about” patients, PPI emphasizes research conducted “with” patients. This approach ensures that research questions align with patient needs, enhances feasibility by considering patient burden, and improves the accessibility of study information. Toho University has been actively incorporating PPI in ALS research since 2017 through its ALS Café initiative. Initially focused on patient support and information exchange, ALS Café has evolved into a platform for research participation. It facilitates discussions, online surveys, and feedback on research protocols. Moving forward, Toho University aims to establish a Research Advocate training program, modeled after initiatives like the Northeast ALS Consortium (NEALS) in the U.S. While challenges such as funding and cultural adaptation remain, PPI holds great potential for advancing ALS research in Japan. Developing a sustainable PPI model in neurology could serve as a blueprint for broader implementation across medical research fields.
