Health and Global Policy Institute (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, including patients, people living with health conditions, their families and caregivers, service users, and other members of the public. We hope diverse stakeholders who are active in involvement from these parties will use J-PEP to contribute to better involvement throughout the country.

 

*Only in Japanese

 

■ Background to the establishment of J-PEP

Since its establishment in 2004, HGPI has upheld the mission to realize citizen-centered health policies. We have been engaged in policy advocacy activities based on discussions among multi-stakeholders, including healthcare providers, researchers, business representatives, administrative and legislative officials, and people with lived experience of health conditions. Additionally, we have supported the meaningful involvement of people with lived experience in policy-making process. In recent years, the importance of meaningful involvement has been recognised and practiced widely. However, emerging challenges, such as a shortage of individuals to be involved and limitations in collecting diverse voices of people with lived experience, have been pointed out.

In light of this situation, Meaningful Involvement Promotion Project has aimed to promote meaningful involvement of people with lived experience, considering the current social situations. To achieve that, we have conducted discussions among advisory board members and conducted hearings with a wider range of stakeholders. While reflecting on past feedback from stakeholders, J-PEP was established as an infrastructure to support the effective implementation of and to resolve issues surrounding involvement from people with lived experience.

 

■ J-PEP’s visions

J-PEP will provide useful information on involvement, introduce opportunities for involvement, and serve as a hub for interaction with various stakeholders centered on people with lived experience of health conditions (including patients, people living with health conditions, their families and caregivers, service users, and other members of the public), and will promote involvement among those parties, thus improving the health of civil society.

 

■ Main features of J-PEP

J-PEP is an information and exchange platform for parties engaged in involvement for people with lived experience that provides a central source of information on open recruitment, training programs, and events, as well as profiles for registered J-PEP members. J-PEP is equipped with a number of features tailored to the needs of various users, such as people with lived experience, government officials, and providers of patient advocate training programs.

 

How people with lived experience can use J-PEP

 

How government officials and training providers can use J-PEP

 

■ How J-PEP is operated

J-PEP is operated by non-profit, independent, private health policy think tank Health and Global Policy Institute (HGPI), which serves as its secretariat from a neutral standpoint. Through HGPI’s Meaningful Involvement Promotion Project, a wide range of stakeholders is involved in operating J-PEP. They include members of the project advisory board, people with lived experience, government officials, researchers, and private sector representatives.

 

Advisory Board Member (Titles omitted; in Japanese alphabetical order by last name)

Kyoko Ama (Representative, Children and Healthcare Project; Fellow, HGPI)
Shinsuke Amano (Chair, The Japan Federation of Cancer Patient Groups; CEO, Group Nexus Japan)
Etsuko Aruga (Professor, Department of Palliative Medicine, Teikyo University School of Medicine)
Shino Ikeda (Public Affairs Manager, Public Affairs & Sustainability, Market Access & External Affairs Division, Novo Nordisk Pharma Ltd.)
Naomi Sakurai (President, Cancer Solutions Co., Ltd)
Takeshi Shukunobe (President and CEO, PPeCC)
Kazuyuki Suzuki (Senior Lead, Patient Engagement Group, Strategy & Execution, Novartis Pharma K.K.)
Yasuhiro Sensho (CEO, SENSHO-GUMI, Co., Ltd.; Former Director-General, MHLW)
Teppei Maeda (Lawyer, Maeda & Unosawa Law Offices; Representative, Medical Basic Act Community)
Kaori Muto (Professor, Department of Public Policy Studies, Institute of Medical Science, University of Tokyo)
Akira Morita (Representative Director, Next Generation Fundamental Policy Research Institute (NFI))
Ikuko Yamaguchi (Chief Director, Consumer Organization for Medicine and Law (COML))
Risa Yamazaki (Public Affairs Group, External Affairs Department, Chugai Pharmaceutical Co., LTD.)
Yuhei Yamada (Representative Director, Porque, the Organization of Persons with Psychosocial Disabilities)

Donors and sponsors (in no particular order)
Current as of November 2024

Novartis Pharma K.K.
Novo Nordisk Pharma Ltd.

Past Donors and Sponsors

Syneos Health Commercial K.K. (2023)
Chugai Pharmaceutical Co., Ltd. (2023)
Novartis Pharma K.K. (2023)