Survey reveals strong support for patient involvement in allergy research

A team of researchers from Keio University School of Medicine, the Institute of Medical Science at the University of Tokyo, and the National Center for Child Health and Development has reported the first cross-disease, cross-stakeholder survey on PPIE in Japan. The study compared allergy research with cancer and rare diseases, fields where PPIE has already advanced. 

The survey revealed that:
•100% of allergy-related PAGs considered PPIE essential, and 50% had formal rules for engagement.

•By contrast, only 9.4% of allergy researchers reported established rules, and just 50% recognized PPIE as necessary-lower than in cancer and rare disease research (64.7%).

•PAGs identified three priorities: (1) training programs for both patients and researchers, (2) coordinators to support collaboration, and (3) toolkits and case studies to guide implementation.

•PAGs widely used digital tools for communication (100%), while adoption among researchers was minimal (6.3–15.6%). 

These findings show that allergy patient advocacy groups in Japan are ready and willing to engage, but researchers have yet to catch up. Closing this gap is critical, especially since allergy management depends heavily on daily-life factors such as environment and lifestyle. Patient perspectives are essential to shaping meaningful research." 

Dr. Takeya ADACHI, corresponding author and dermatologist at Keio University

The study also emphasized that these results align with the Japan Agency for Medical Research and Development (AMED) initiatives to promote PPIE as part of national health policy. Their presentation at the UNGA Science Summit 2025 further highlights the global significance of advancing inclusive, patient-centered research practices.