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Why Do Data Users Say Health Care Data Are Difficult to Use? A Cross-Sectional Survey Study

Authors
 Ho Heon Kim  ;  Bora Kim  ;  Segyeong Joo  ;  Soo-Yong Shin  ;  Hyo Soung Cha  ;  Yu Rang Park 
Citation
 JOURNAL OF MEDICAL INTERNET RESEARCH, Vol.21(8) : e14126, 2019 
Journal Title
JOURNAL OF MEDICAL INTERNET RESEARCH
ISSN
 1439-4456 
Issue Date
2019
Keywords
data anonymization ; data linking ; data protection ; data sharing ; health care data demand ; privacy act
Abstract
BACKGROUND: 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.

OBJECTIVE: 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.

METHODS: 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.

RESULTS: 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.

CONCLUSIONS: 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.
Files in This Item:
T201904252.pdf Download
DOI
10.2196/14126
Appears in Collections:
1. College of Medicine (의과대학) > Dept. of Biomedical Systems Informatics (의생명시스템정보학교실) > 1. Journal Papers
Yonsei Authors
Park, Yu Rang(박유랑) ORCID logo https://orcid.org/0000-0002-4210-2094
URI
https://ir.ymlib.yonsei.ac.kr/handle/22282913/173176
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