Health and Global Policy Institute has released a new report, “The Current State of Health Data for Research Purposes in Japan: Toward the Creation of a World-class Health Database in the Future.” This report is based on roundtable discussion held on December 15, 2021 to discuss Japan’s health data and policies to further promote its use for research in the future.

Key takeaways were as follows.

1. While a vast amount of health data has been collected in Japan, it is hard to say that an environment has been created that allows for sufficient utilization, given the number and complexity of procedures required to gain access to data, among other issues.
2. There have been a number of Government initiatives to establish public health databases like the NDB*. However, striking a balance between protecting private information and simplifying requirements for third-party use remains a challenge.
3. In managing data systems, it is important to advance trust and relationships of trust in with the frontline healthcare workers who are being asked to collect and input data. There is a need to consider initiatives to offer rewards commiserate with the burden placed on healthcare workers in managing data systems as the use of data for research expands.
4. It is important that the public, as the owner of health data, is made aware of its use and the benefits it can provide, with sufficient transparency. Greater efforts are needed to enhance understanding and awareness about health data.

*NDB: National Database of Health Insurance Claims and Specific Health Checkups of Japan

• Meeting participants

• Karen Makishima (Minister for Digital Agency; Minister in Charge of Administrative Reform; Minister of State for Regulatory Reform) (opening remarks delivered via prerecorded video)
• Shinichi Noto (Professor, Faculty of Rehabilitation, Niigata University of Health and Welfare; Director, Center for Health Economics & QOL Research, Department of Occupational Therapy, Niigata University of Health and Welfare; President, International Society for Pharmacoeconomics and Outcomes Research (ISPOR))
• Eiko Shimizu (Project Associate Professor, ITHC, Graduate School of Pharmaceutical Sciences, The University of Tokyo)
• Tomoya Myojin (Assistant Section Chief, Insurance Data Planning Office, Healthcare Coordination Policy Division, Health Insurance Bureau, MHLW)
• Masatoshi Adachi (Chief Data Protection Officer and Director of Risk Management (CDPO), JMDC Inc.; Attorney-at-Law, Patent Attorney, and Registered Information Security Specialist)
• Tomohiro Kuroda (Chief Information Officer (CIO), Kyoto University Hospital; Professor)
• Mitsuru Mizuno (Director, Project for Genome and Health Related Data, Japan Agency for Medical Research and Development (AMED))
• Naohiro Yonemoto (Director, Outcomes and Evidence, Health and Value Overview Division, Pfizer Japan Inc)

For further information, please see the report below.