October 9, 2025
Keio University School of Medicine
Researchers in Japan have conducted the first nationwide survey of patient and public involvement and engagement (PPIE) in allergy research, revealing a striking gap between patient advocacy groups (PAGs) and researchers. While PAGs show strong commitment to collaboration, researcher awareness and implementation of PPIE remain limited. The study was recently published in Allergy, the official journal of the European Academy of Allergy and Clinical Immunology (EAACI), and its findings were also presented at the Science Summit at the 80th United Nations General Assembly (UNGA) in September 2025.
Tokyo, Japan – [Sept 18, 2025] –
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," said Dr. Takeya ADACHI, corresponding author and dermatologist at Keio University. "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."
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.
About the Study:
The study, titled “Exploring Patient and Public Involvement and Engagement in Allergy Research: Cross-Disease and Cross-Stakeholder Perspectives in Japan”, was published in Allergy on September 18, 2025.
Reference
Authors
Takeya Adachi, MD, PhD1,2,3,4,5*, Saori Watanabe, PhD6*, Yu Kuwabara, MD, PhD4,7, Yuki Abe, MD, PhD4,8, Masaki Futamura, MD, PhD4,9, Takenori Inomata, MD, PhD, MBA4,10,11,12,13, Keima Ito, MD, PhD4,14, Meiko Kimura, MD, PhD4,9,15, Keiko Kan-o, MD, PhD4,16, Hanako Koguchi-Yoshioka, MD, PhD4,17, Yosuke Kurashima, PhD4,18, Katsunori Masaki, MD, PhD2,4,19, Mayumi Matsunaga, MD, PhD4,20, Haruka Miki, MD, PhD 4,21, Saeko Nakajima, MD, PhD4,22, Yuumi Nakamura, MD, PhD4,23, Yasushi Ogawa, MD, PhD4,24, Aiko Oka, MD, PhD4,25, Masafumi Sakashita, MD, PhD4,26, Sakura Sato, MD,PhD4,27, Kyohei Takahashi, MD, MPH, PhD4,27, Masato Tamari, MD, PhD4,28, Takeshi Tsuda, MD, PhD4,29, Satoru Yonekura, MD, PhD4,30, Mayumi Tamari, MD, PhD 4,31, Kaori Muto, PhD6, Hideaki Morita, MD, PhD4,28,32
Title of original paper
Exploring Patient and Public Involvement and Engagement in Allergy Research: Cross-Disease and Cross-Stakeholder Perspectives in Japan
Journal
Allergy
Affiliations
1 Department of Dermatology, Keio University School of Medicine, Tokyo, Japan;
2 Allergy Center, Keio University Hospital, Tokyo, Japan;
3 Department of Medical Innovation and Translational Medical Science, Graduate School of Medical Science, Kyoto Prefectural University of Medicine, Kyoto, Japan;
4 ENGAGE-Task Force, Tokyo, Japan;
5 NPO Cheiron Initiative, Tokyo, Japan;
6 Department of Public Policy, The Institute of Medical Science, The University of Tokyo, Tokyo, Japan;
7 Institute for Clinical Research, NHO Mie National Hospital, Mie, Japan;
8 Department of Respiratory Medicine, Faculty of Medicine, Hokkaido University, Hokkaido, Japan;
9 Department of Pediatrics, NHO Nagoya Medical Center, Aichi, Japan;
10 Department of Ophthalmology, Juntendo University Graduate School of Medicine, Tokyo, Japan;
11 Department of Hospital Administration, Juntendo University Graduate School of Medicine, Tokyo, Japan;
12 Department of Telemedicine and Mobile Health, Juntendo University Graduate School of Medicine, Tokyo, Japan;
13 Data Science, Juntendo University Graduate School of Medicine, Tokyo, Japan;
14 Department of Respiratory Medicine, Allergy and Clinical Immunology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan;
15 Department of Ophthalmology, Juntendo University Urayasu Hospital, Chiba, Japan;
16 Department of Respiratory Medicine, Tokyo Women's Medical University, Tokyo, Japan;
17 Department of Dermatology, Graduate School of Medicine, Osaka University, Suita, Osaka, Japan;
18 Department of Innovative Medicine, Graduate School of Medicine, Institute for Advanced Academic Research, Chiba University, Chiba, Japan;
19 Division of Pulmonary Medicine, Department of Medicine, Keio University School of Medicine, Tokyo, Japan;
20 Department of Pediatrics, Hamamatsu University School of Medicine, Shizuoka, Japan;
21 Department of Rheumatology, Institute of Medicine, University of Tsukuba, Ibaraki, Japan;
22 Department of Drug Discovery for Inflammatory Skin Diseases, Kyoto University Graduate School of Medicine, Kyoto, Japan;
23 Cutaneous Allergy and Host Defense, Immunology Frontier Research Center, Osaka University, Osaka, Japan;
24 Department of Advanced Medicine, Nagoya University Hospital, Aichi, Japan;
25 Department of Otorhinolaryngology, Head and Neck Surgery, International University of Health and Welfare Narita Hospital, Chiba, Japan
26 Department of Otorhinolaryngology Head and Neck Surgery, University of Fukui, Fukui, Japan;
27 Department of Allergy, Clinical Research Center for Allergy and Rheumatology, NHO Sagamihara National Hospital, Kanagawa, Japan;
28 Department of Allergy and Clinical Immunology, National Research Institute for Child Health and Development, Tokyo, Japan;
29 Department of Otorhinolaryngology–Head and Neck Surgery, Osaka University Graduate School of Medicine, Osaka, Japan;
30 Department of Dermatology, Kyoto University Graduate School of Medicine, Kyoto, Japan;
31 Division of Molecular Genetics, The Jikei University School of Medicine, Research Center for Medical Science, Tokyo, Japan;
32 Allergy Center, National Center for Child Health and Development, Tokyo, Japan
*These authors equally contributed to this work.
Contact:
Dr. Takeya Adachi
Email: jpn4156@me.com
Affiliation: Department of Dermatology, Keio University School of Medicine
Address: 35 Shinanomachi, Shinjuku-ku, Tokyo 160-8582 Japan
Phone: +81-3-5363-1211
Funding:
This research was supported by the Japan Agency for Medical Research and Development (Grant Numbers: JP25oa0439006, JP25ek0410130, JP24ek0410090), the Scientific Research Fund of the Ministry of Health, Labour and Welfare, Japan (Grant Numbers: 21FE2001, 24FE2002, 25FE2001, JPMH23AD1001), JSPS KAKENHI (Grant Number: 22K16268), the Secom Science and Technology Foundation, JSA WAO 2020 Memorial Research Grant Program, and the Japanese Society of Allergology Clinical Research Support Program.
Conflict of Interest Disclosure:
The authors declare no competing interests.