Abstract
The concept of MyData emerged as a paradigm shift in personal data management and the process of seeking to transform the current organization-centered system. MyData enables the utilization of one’s own personal information that is scattered among various institutions as a system for data subjects to exercise rights of self-determination. We aimed to develop and demonstrate a MyData platform (MyHealthData) that allows data subjects to download and manage health-related personal data stored in various medical institutions. The platform consists of a mobile app for users, API (application–program interface) for data conversion and exchange installed in the hospital information system (HIS), and a relay server connected to the blockchain to ensure data integrity. User surveys were conducted to explore perceived usefulness, perceived ease of use, and satisfaction. We provided four services to users through the platform developed in this study: inquiring about medical and health checkup records, health coaching, checking conditions of participation in clinical research, and claims, all by using an app. A total of 1228 participants signed up for the service and the overall user satisfaction was high, especially with ‘inquire about medical and health checkup records’. MyData brings a user-centered paradigm in which data subjects can directly participate in the use of their own data. MyData will improve healthcare data interoperability, allowing it to be used not only in research areas but also in other areas by sharing and integrating various healthcare data.
Highlights
The platform consists of a mobile app for users, API for data conversion and exchange installed in the hospital information system (HIS) or related organizations, and a relay server connected to the blockchain to relay requests between the server and the app
We provided a total of four services to users through the platform developed in this study: inquiring about medical and health checkup records, health coaching, checking conditions of participation in clinical research, and claims
When the user agrees to the terms and conditions and goes through the self-verification process, the MyHealthData membership registration is completed by setting a password for using the app and entering some key information
Summary
The traditional business model of healthcare is generated by medical institutions, insurance companies, pharmaceuticals, or healthcare companies, along with patients [1,2]. The value of a healthcare service is mainly focused on disease treatment with those who directly participate in the medical field, rather than health management for the general population [3,4]. With the advancements in healthcare digitization, Internet of Things (IoT), wearable devices, and Artificial Intelligence (AI), further advanced analytics will empower the complementary value chain of healthcare business with a patient-centered health-management approach throughout the general population [3,7]. As the demand for healthcare shifts from being treatment-focused to disease prevention and health promotion, a self-managing environment for personal health records (PHR) for the general public has emerged [8]
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