Abstructs &
Speakers
Historical background and current status of patient and citizen participation
Kotone Matsuyama
Department of Health Policy & Management, Nippon Medical School / Nippon Medical School Research Coordination Center
Establishing standard treatments and improving treatment satisfaction have long been the direction that drug development should aim for. However, in recent years, there has been an increase in activities aimed at maximizing social value through patient and public involvement (PPI) in drug development. In light of the historical background of the fact the voices of patients, who should be reaping the benefits of drug development, have not been sufficiently reflected, this session will provide an overview of the background and current state of PPI, and explain how efforts should be made for the future .
The goal of "Fairy's," a cancer patient and citizen engagement platform
Yu Komura
National Cancer Center Hospital East
Clinical Research Support Division/Drug Development Promotion Division
SCRUM-Japan MONSTAR-SCREEN has been working on PPI activities with the National Federation of Cancer Patient Organizations and the Japan Pharmaceutical Manufacturers Association since 2019. In addition, in 2021, a PPI committee was established to expand activities. Furthermore, this year, the cancer patient and citizen participation platform "Fairy's" was launched. Fairy's is based on three platforms: "a place for dialogue between patients and researchers," "a place for learning," and "a place for patient and citizen participation in research." It is a comprehensive platform where cancer patients, their families (partners), caregivers, bereaved families, and all other related parties can come together and have a dialogue. In this presentation, we will explain the goals of this platform.
"Social co-creation" in medical research and development: Basic concepts and initiatives
Keiko Katsui
Japan Agency for Medical Research and Development (AMED)
AMED's mission is to support each and every patient and the three aspects of LIFE (life, living, and lifestyle) while quickly putting medical research results into practical use and delivering them to patients and their families. In this article, we will share the basic concept of "social co-creation," an initiative that aims to create medical research and development together with society and create the next society together, and introduce AMED's efforts.
Raising awareness of clinical trials among patient groups
Masaki Okuse
INSPIRE JAPAN WPD Psoriasis Awareness Promotion Association
In Japan, clinical trials are not necessarily widely and correctly recognized in the general public. This is one of the factors that hinder the smooth implementation of clinical trials in Japan. The Clinical Trial Ambassador Project is an activity to deepen the understanding of patient groups about drug development and foster an environment where clinical trials are more accessible. We will introduce examples of clinical trial awareness activities by patient groups as part of the activities of clinical trial ambassadors.
What is Patient Experience Data?
Nobutaka Yagi
Health Economics and Outcome Research Manager, Nippon Boehringer Ingelheim Co., Ltd.; Steering Committee Member / Lay Summary Working Group Leader, PPI Japan Inc.; Representative Director, YORIAILab Inc.
In the past 1-2 years, discussions and organization of Patient Experience Data (PED) have been progressing in Europe and the US. PED should be used for better healthcare decision-making, including drug development plans, approval applications, and medical technology assessments. Internationally, discussions are deepening on the role of patient participation in the construction and interpretation of PED and its value. Public guidance is also being developed. However, in Japan, PED has not even been discussed. This article explains what PED is and what it can bring, so that those involved in drug development and healthcare can have practical discussions with a global perspective on the use of PED in decision-making in the near future.
Social co-creation of "Clinical Trial Ambassadors" to promote proper understanding of clinical trials and improve patient decision-making
Keiko Omomo
CMIC Healthcare Institute Co., Ltd.
Recently, pharmaceutical companies have been actively using various methods to incorporate the opinions of patients and their families into drug development. However, in order for patients and citizens to participate in drug development, it is important for them to have a correct understanding of drug development and to deepen mutual understanding with the pharmaceutical industry.
In this lecture, we will introduce the "Clinical Trial Ambassador Project," a program launched in 2021 to provide education and a forum for dialogue for patient groups in order to deepen mutual understanding among pharmaceutical companies, SMOs (site management organizations), CROs (contract research organizations), academia, and patient groups, and will also discuss future prospects.
