Development of medical research governance for 21st century by continuous communication with patients

2016 Fiscal Year Final Research Report

• Project/Area Number: 15K15167
• Research Category: Grant-in-Aid for Challenging Exploratory Research
• Allocation Type: Multi-year Fund
• Research Field: Medical sociology
• Research Institution: Osaka University
• Principal Investigator: KATO Kazuto 大阪大学, 医学系研究科, 教授 (10202011)
• Co-Investigator(Renkei-kenkyūsha): YOSHIZAWA Go 大阪大学, 大学院医学系研究科, 准教授 (10526677) ; MINARI Jusaku 大阪大学, 大学院医学系研究科, 助教 (60635332) ; TAKAHASHI Masanori 大阪大学, 大学院医学系研究科, 教授 (20359847) ; ASANO Yoshihiro 大阪大学, 大学院医学系研究科, 講師 (60527670) ; MATSUMURA Yasushi 大阪大学, 大学院医学系研究科, 教授 (90252642) ; TAKEDA Toshihiro 大阪大学, 大学院医学系研究科, 准教授 (70506493) ; KIMURA En 国立精神・神経医療研究センター, 臨床研究支援部 早期・探索的臨床試験室, 室長 (60433025) ; TASHIRO Shimon 国立がん研究センター, 生命倫理研究室, 室長 (50548550)
• Project Period (FY): 2015-04-01 – 2017-03-31
• Keywords: 医学研究 / 研究ガバナンス / ダイナミック・コンセント / 患者参加型研究 / 患者とのコミュニケーション / 患者との協働

Outline of Final Research Achievements

In order to establish new medical research governance for 21st century, we have developed a new interactive system in which patients continuously communicate with medical researchers and input their heath data for medical research. We first carried out survey and analysis of similar activity in the UK and the US, and also conducted an opinion survey of Japanese patients about use of ICT. These research works showed that there is potential for patient-centered activities for medical research in Japan. We then constructed an actual web-system and consulted members of patient groups about the contents of the system and procedures for utilization that need amendments. The system is now almost ready for the implementation with rare disease patients with neuro- muscular diseases.

Free Research Field

医学倫理・生命倫理