Development of a MyData Platform Based on the Personal Health Record Data Sharing System in Korea

Abstract

Objectives: recently, there has been a government-level movement to guarantee the rights of individual entities regarding the use of their personal data worldwide. This movement has been specifically named as ‘MyData’ in South Korea and has variants such as ‘Self data’, ‘Midata’, ‘MesInfos’, ‘Personal Information Management Services’, ‘Personal Data Economy’ and ‘Internet of Me’ in other countries. This research project aimed to establish and demonstrate a system called ‘HiMD’, which allows individuals to select data sharing institutions and control a range of data utilization parameters under the MyData ecosystem. Method: we developed the MyData Platform, a personal health record data sharing system. The HiMD included several user-empowerment functions such as self-determination for data sharing. Actual platform users were recruited from three university-level hospitals for system assessment. Result: females comprised the majority of users with 991 participants (78.1%). Additionally, data consensus results revealed a decrease in given user permissions (from 94.9% to 79.4%) as the range and depth of permissions increased. Most users agreed to open their medical data for commercial uses (n = 1007, 79.4%) and most of those users were interested in DNA analysis (n = 888, 81.2%). Finally, all results for the five questions presented positive answers. All average values on the five questions scored above three on the Likert scale. In other words, over 50% participants gave point 4 and point 5. Conclusion: the contribution of this study is that it developed and demonstrated a MyData system that reflects the right to data portability. It means that the users can proactively make decisions regarding sharing and transferring their own data. These results are expected to contribute to developing future personal health record (PHR) systems of user-oriented and utilization of personal health data.

Keywords

• personal health record
• electronic medical record
• data management
• e-health