JMIR Publications

ABSTRACT

Background:

There has been significant effort in attempting to utilize healthcare data; however, laws that protect patients’ privacy have restricted data utilization because healthcare data contains sensitive information. Thus, discussions on privacy laws are now focusing on the active utilization of healthcare data beyond protection. However, current literature does not clarify the obstacles that make data usage and de-identification 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 utilization by each medical area, 2) institutional efforts and difficulties in de-identification processes and, 3) users’ data linking needs.

Methods:

We conducted a cross-sectional online survey. In order to recruit people who have used healthcare 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, and 10 participants were excluded for either inconsistent responses or lack of demand for healthcare data. Finally, 118 participants’ responses were analyzed. The majority of participants work in general hospitals or universities (62/118, 52.5%; 51/118, 43.2% multiple). More than half of all participants responded that they have a need for clinical data (82/118, 69.5%) and public data (76/118, 64.4 %). Furthermore, 85.6% of respondents conducted de-identification measures when using data, and they considered rigid social culture as an obstacle for de-identification (28/101, 27.7%). In addition, they require data linking (98/118, 83.1%), and they noted deregulation and data standardization to allow access to healthcare data linking (33/98, 33.7%; 38/98, 38.8%). There are not significant differences in the proportion of responded data needs and linking in groups that used healthcare data for either data demand for public purposes and commercial purposes.

Conclusions:

This study provides a cross-sectional view from a practical, users-oriented perspective on the kinds of data users want to utilize, efforts and difficulties in de-identification processes, and the needs for data linking. Most users want to use clinical and public data; most participants conduct de-identification 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.