*A report on the event has been published on August 13, 2025.

On May 17, 2025, Health and Global Policy Institute (HGPI) hosted “The Patient and Citizen Lived Experience Forum 2025,” bringing together patients, for people with lived experience and citizens across Japan who are interested in health policy and related topics.

Since the enactment of the Cancer Control Act in 2006, the importance of incorporating the perspectives of patients and people with lived experience in the policy-making process has been widely recognized. Their participation as committee members in policy councils at both the national and local levels has become increasingly common. However, in interviews conducted independently by HGPI, persistent challenges have been newly identified. Patients and people with lived experience have expressed uncertainty about how to participate effectively and meaningfully, and have found it challenging to engage in policy discussions with professionals. In addition, national and local government officials have reported that public recruitment efforts receive few applicants, and that there are insufficient opportunities to truly hear the real firsthand voices of patients, people with lived experience, and  citizens. 

To address these issues and explore ways to promote broader and more effective involvement, the forum featured two main programs that shared practical insights and ideas for future engagement.

Program 1: Talk Session — “The First Step Toward Meaningful Involvement: Moving Forward Together”
This session welcomed a diverse group of participants, including patients and people with lived experience who have long been involved in policy-making, government officials, and individuals seeking to contribute their voices to health policy. Government officials shared challenges related to operating policy councils and examples of insights gained through patient involvement. Meanwhile, speakers with lived experience reflected on their journeys to becoming committee members and shared the knowledge, insight , and lessons they have acquired through their involvement.

Program 2: Level Up Workshop — “Let’s Take Our First Step Toward Involvement!”
In the second half of the forum, participants formed small groups to discuss familiar themes related to health policy in an open and informal setting. Through collaborative dialogue among people from diverse backgrounds—many of whom met for the first time—the workshop provided an opportunity for participants to experience of how their own perspectives can contribute to the policy-making process.

[Event Details]

• Date & Time: Saturday, May 17, 2025; 12:00-16:30 (Networking Session: 12:00–13:00)
• Format: In-person only
• Venue: Global Business Hub Tokyo (3F, Otemachi Financial City Grand Cube, 1-9-2 Otemachi, Chiyoda-ku, Tokyo)
• Language: Japanese only
• Participation Fee: Free
• Capacity: 80 participants (first come, first served)
• Organized by: Health and Global Policy Institute (HGPI)

[Program] (Titles omitted, no particular order)

12:00-13:00	Networking Session (Optional)
13:00-13:05	Opening Remarks Yui Kohno (Manager, HGPI)
13:05-15:10	Program 1: Talk Session — “The First Step Toward Meaningful Involvement: Moving Forward Together”
	Panel Talk 1: Listening to Real Examples of Involvement
	Yutaka Ozawa (Assistant Section Chief, Cancer Control Group, Disease Control Division, Medical Bureau, Health and Welfare Department, Shizuoka Prefecture ) Hitoshi Fukuhara (Representative Director, Heart Valve Voice) Kyoko Yamauchi (Representative, Swallow Association) Facilitator: Honoka Hiraka (Senior Associate, HGPI)
	Panel Talk 2: Diverse Experiences from the Field
	Mayu Okuno (President, Saitama IBD Association) Kimie Sakurai (Vice Chair, NPO GISTERS) Takeshi Shukunobe (President and CEO, PPeCC) Yuuhei Yamada (Representative Director, Porque, the Organization of Persons with Psychosocial Disabilities) Facilitator: Orie Yamashita (Associate, HGPI)
15:25-16:25	Program 2: Challenging Workshop — “Let’s Take Our First Step Toward Involvement!”
16:25-16:30	Closing

HGPI will continue to provide opportunities and build networks that empower patients, people with lived experience, and citizens to meaningfully participate in health policy and contribute their voices to shaping the future of healthcare.

In this context, HGPI launched the Japan’s Patient Expert Platform (J-PEP) website on December 1, 2024. J-PEP is an information and exchange platform that aims to support sustainable and effective involvement in the policymaking process for a wide range of people with lived experience of health conditions, including patients, people living with health conditions, their families and carers, service users, and other members of the public. We hope diverse stakeholders will use J-PEP to contribute to better involvement throughout the country.

Further information available here