Authors
Ho Heon Kim, Bora Kim, Segyeong Joo, Soo-Yong Shin, Hyo Soung Cha, Yu Rang Park
Publication date
2019/8/6
Journal
Journal of medical Internet research
Volume
21
Issue
8
Pages
e14126
Publisher
JMIR Publications
Description
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 …
Total citations
20202021202220232346
Scholar articles
HH Kim, B Kim, S Joo, SY Shin, HS Cha, YR Park - Journal of medical Internet research, 2019