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’, ‘Me-sInfos’, ‘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 inter-ested 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.
| Original language | English |
|---|---|
| Article number | 8208 |
| Journal | Applied Sciences (Switzerland) |
| Volume | 11 |
| Issue number | 17 |
| DOIs | |
| State | Published - Sep 2021 |
Bibliographical note
Funding Information:Health‐related data play many roles in the field of medicine in terms of data econ‐ omy, prediction, prevention and personalised health care [26]. This paper proposed HiMD, which is a medical data sharing platform that allows users to manage their own data by giving them the authority to set the boundaries by which their data are used. This research was supported by the MyData governmental policy project in accordance with the South Korean government’s intentions to give users rightful ownership over their own medical data. The main functions include data consensus‐setting functions for hospitals and companies, data searching, data downloading and data sharing. Through this plat‐ form, users have the ability to manage and view their data. This empowers the users when they engage the system. The system called ‘HiMD’ was designed to identify the usage status of individual health data through PHR scenarios in the MyData system. Three hospitals participated in platform testing. These hospitals agreed to provide health examination data, prescription data, DNA data and depression‐related data. Additionally, four companies participated in platform testing by providing services for gene sequencing for cancer analysis, man‐ agement of chronic disease, home meal replacement and mental healthcare. Then, user satisfaction and intention‐to‐use analyses were performed with a focus on various benefits provided through data ownership. All users were provided with informed consent. Then, a survey was conducted for users who used the system for more than 2 weeks. A total of 2533 real participants were recruited from the health examination centres of the partici‐ pating medical institutions, although only 1269 agreed to participate in the survey. Socio‐demographic results revealed that females comprised the majority of users with 991 participants (78.1%). According to related research, this may be the result of fe‐ males being more sensitive to healthcare than males [27]. Demographic results also re‐ vealed the highest participation of 36.3% among adults aged 30 to 39 year (n = 465), whereas the elderly over age 50 exhibited the lowest participation of 14.0% (n = 178). This may be because relatively young adults are highly accepting of technology, whereas the elderly have a hard time adopting modern technology [28]. Additional research is re‐ quired to determine how age influences the adoption of the proposed system.
Publisher Copyright:
© 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Keywords
- Data management
- Electronic medical record
- E‐health
- Personal health record