Kim Ho Heon, Kim Bora, Joo Segyeong, Shin Soo-Yong, Cha Hyo Soung, Park Yu Rang
Department of Biomedical Systems Informatics, Yonsei University College of Medicine, Seoul, Republic of Korea.
Emphasis Information Technology Inc, Seoul, Republic of Korea.
J Med Internet Res. 2019 Aug 6;21(8):e14126. doi: 10.2196/14126.
There has been significant effort in attempting to use health care data. However, laws that protect patients' privacy have restricted data use because health care data contain sensitive information. Thus, discussions on privacy laws now focus on the active use of health care data beyond protection. However, current literature does not clarify the obstacles that make data usage and deidentification processes difficult or elaborate on users' needs for data linking from practical perspectives.
The objective of this study is to investigate (1) the current status of data use in each medical area, (2) institutional efforts and difficulties in deidentification processes, and (3) users' data linking needs.
We conducted a cross-sectional online survey. To recruit people who have used health care data, we publicized the promotion campaign and sent official documents to an academic society encouraging participation in the online survey.
In total, 128 participants responded to the online survey; 10 participants were excluded for either inconsistent responses or lack of demand for health care data. Finally, 118 participants' responses were analyzed. The majority of participants worked in general hospitals or universities (62/118, 52.5% and 51/118, 43.2%, respectively, multiple-choice answers). More than half of participants responded that they have a need for clinical data (82/118, 69.5%) and public data (76/118, 64.4%). Furthermore, 85.6% (101/118) of respondents conducted deidentification measures when using data, and they considered rigid social culture as an obstacle for deidentification (28/101, 27.7%). In addition, they required data linking (98/118, 83.1%), and they noted deregulation and data standardization to allow access to health care data linking (33/98, 33.7% and 38/98, 38.8%, respectively). There were no significant differences in the proportion of responded data needs and linking in groups that used health care data for either public purposes or commercial purposes.
This study provides a cross-sectional view from a practical, user-oriented perspective on the kinds of data users want to utilize, efforts and difficulties in deidentification processes, and the needs for data linking. Most users want to use clinical and public data, and most participants conduct deidentification processes and express a desire to conduct data linking. Our study confirmed that they noted regulation as a primary obstacle whether their purpose is commercial or public. A legal system based on both data utilization and data protection needs is required.
人们在尝试使用医疗保健数据方面付出了巨大努力。然而，保护患者隐私的法律限制了数据的使用，因为医疗保健数据包含敏感信息。因此，目前关于隐私法的讨论聚焦于在保护之外积极使用医疗保健数据。然而，当前的文献并未阐明导致数据使用和去识别化过程困难的障碍，也未从实际角度详细说明用户对数据链接的需求。
本研究的目的是调查（1）各医疗领域的数据使用现状，（2）去识别化过程中的机构努力和困难，以及（3）用户的数据链接需求。
我们开展了一项横断面在线调查。为招募使用过医疗保健数据的人员，我们宣传了推广活动，并向一个学术团体发送官方文件以鼓励参与在线调查。
共有128名参与者回复了在线调查；10名参与者因回答不一致或对医疗保健数据缺乏需求而被排除。最终，对118名参与者的回复进行了分析。大多数参与者在综合医院或大学工作（分别为62/118，52.5%和51/118，43.2%，多项选择题答案）。超过一半的参与者表示他们需要临床数据（82/118，69.5%）和公共数据（76/118，64.4%）。此外，85.6%（101/118）的受访者在使用数据时采取了去识别化措施，他们认为严格的社会文化是去识别化的障碍（28/101，27.7%）。此外，他们需要数据链接（98/118，83.1%），并且他们指出需要放松管制和实现数据标准化以允许进行医疗保健数据链接（分别为33/98，33.7%和38/98，38.8%）。将医疗保健数据用于公共目的或商业目的的群体在数据需求和链接的回复比例上没有显著差异。
本研究从实用的、以用户为导向的角度提供了一个横断面视角，涉及用户想要利用的数据类型、去识别化过程中的努力和困难以及数据链接需求。大多数用户希望使用临床和公共数据，大多数参与者进行去识别化过程并表达了进行数据链接的愿望。我们的研究证实，无论其目的是商业还是公共，他们都将监管视为主要障碍。需要一个基于数据利用和数据保护需求的法律体系。
