HGPI Dementia Policy Project Symposium "Building an R&D System Together with People Living With Dementia and Their Families - Driving Parallel Progress on an Inclusive Society and in R&D"

In its capacity as a non-profit, independent, non-partisan health policy think-tank, Health and Global Policy Institute (HGPI) views all issues related to population aging starting with dementia as health policy issues on the global level and has made repeated initiatives to advance measures for dementia around the world. In particular, we were an early voice that advocated for the importance of unified, Government-wide dementia measures, and we have continuously issued recommendations to that end. Those recommendations helped shape the National Framework for Promotion of Dementia Policies in 2019. However, there are numerous lingering issues in the field of dementia that remain to be addressed. Namely, to advance R&D in this area and to achieve a dementia-friendly society, we must construct a partnership that enables industry, Government, academia, and civil society – starting with people living with dementia and their family members – to collaborate as one. Cooperation from people living with dementia and their family members is especially important in R&D. Building a foundation for collaboration at all stages of R&D with people living with dementia, their families, and all healthy people who may develop dementia in the future will contribute greatly to advancing R&D in this field.

In recent years, the Japan Agency for Medical Research and Development (AMED) has provided leadership in all areas of medical research and has recommended the inclusion of Patient and Public Involvement (PPI) in research. Additionally, looking to other fields such as cancer medicine, we see that patient advocacy organizations are already actively participating in clinical trials, and synergy between the parties most affected and researchers is already driving progress in R&D. We are now at the stage in the field of dementia where we must bring together People with dementia, Public and Private Partnerships in a “PPPP” platform and enable diverse parties to collaborate including in building an inclusive society and promoting R&D.

Looking overseas, we find there are a number of groundbreaking initiatives in the field of dementia that are building foundations for proactive involvement from people living with dementia and their family members in R&D. For example, the Alzheimer’s Association (AA) in the U.S. has established an online matching platform called TrialMatch for linking people living with dementia, family members, and healthy people with a broad variety of research projects from pharmaceuticals to care for people living with dementia and family support. TrialMatch strikes a good balance between online and offline support because in addition to online matching, it also features a comprehensive support system that provides consultation support and awareness-building toward involvement in R&D in communities, healthcare and long-term care facilities, and other offline settings. Utilizing the concept of Community-based Participatory Research (CBPR), we must build a similar system for advancing integrated efforts to build an inclusive society while promoting R&D in Japan as well.

Based on these circumstances, the HGPI Dementia Policy Project has started an initiative for FY2022 called “Building an R&D System Together with People Living With Dementia and Their Families – Driving Parallel Progress on an Inclusive Society and in R&D” in which we are currently holding repeated discussions with multi-stakeholders in dementia and other areas that include representatives of the parties most affected, academia, and industry. At those discussions, a number of issues have been raised regarding efforts to promote R&D in the field of dementia through advancing PPI. These include building understanding toward involvement as a foundation for PPI, building trust and maintaining close communication among people living with dementia, their family members, and academia, and attaining a shared understanding toward the objective of advancing PPI.

At this symposium, we will gather domestic and international multi-stakeholders to discuss the promotion of PPI in the field of dementia as well as issues, future prospects, and solutions with the goal of promoting dementia R&D. Specifically, while ascertaining current circumstances in R&D systems in the field of dementia in Japan and overseas and sorting the various issues facing those systems, we will present points of question to each other regarding the co-creation of R&D to achieve “research that incorporates dialogue” between the parties most affected and academia through PPI in the field of dementia. Also, while referring to good examples from other fields of disease in Japan and overseas, we will aim to compile current issues and necessary future initiatives through a discussion that will span fields of diseases and specialties.

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