TOKYO -- A group of Japanese universities in partnership with the government plan to establish an information bank to share medical data among hospitals with patient permission, a system seen saving costs and time by eliminating redundant tests and simplifying communication.
Public and private institutions have been working on information banks for various fields since Japan passed new personal data legislation last December. The medical version will be established by the Jikei University School of Medicine, Osaka City University, the University of Tokushima and 11 others along with 50 hospitals, the Ministry of Internal Affairs and Communication, and the Cabinet Secretariat among others. Information will be saved on the cloud with patient permission only. Testing will begin this fall and run through March 2019, with plans to collect data from roughly 1,400 people.
Currently in Japan, each hospital manages medical data separately.
In addition to information sharing, the new system will allow patients to sell their data to drug makers, insurers, sports clubs and other companies. A payment scheme will be determined going forward. One system under consideration would compensate patients in accordance with the amount of data provided.
Diagnostic imaging, prescription information, blood work, disease names and other data will mainly be provided to companies. Patients will not be identified by name, but other personal information such as age and sex can be given with permission. Companies will be able to obtain information about the same patient over time as well.
Testing will cost about 100 million yen ($918,500) and will be based out of the Japan Agency for Medical Research and Development.
Data security is an important issue for information banks. Over 80% of the Japanese populace has concerns about providing personal information, according to the Ministry of Internal Affairs and Communications.