Why Do Data Users Say Health Care Data Are Difficult to Use? A Cross-Sectional Survey Study
Ho Heon Kim1, Bora Kim2, Segyeong Joo3,4
1Department of Biomedical Systems Informatics, Yonsei University College of Medicine, Seoul, Republic of Korea.
Journal of Medical Internet Research
|August 8, 2019
Summary
This study surveyed health care data users, finding a strong need for clinical and public data linking. Users identified rigid social culture and regulations as key obstacles to deidentification and data access.
Area of Science:
- Health Informatics
- Data Privacy
- Medical Data Utilization
Background:
- Patient privacy laws restrict sensitive health care data use.
- Focus is shifting towards active data utilization beyond mere protection.
- Literature lacks clarity on data usage obstacles and user needs for data linking.
Purpose of the Study:
- Investigate current health care data usage across medical areas.
- Examine institutional deidentification efforts and challenges.
- Determine user needs for health care data linking.
Main Methods:
- Conducted a cross-sectional online survey of health care data users.
- Recruited participants via promotion campaigns and academic society outreach.
- Analyzed responses from 118 participants who met inclusion criteria.
Main Results:
- Over half of participants need clinical (69.5%) and public (64.4%) data.
- 85.6% perform deidentification, citing rigid social culture as an obstacle.
- 83.1% require data linking, advocating for deregulation and standardization.
Conclusions:
- Users desire clinical and public data access and perform deidentification.
- Regulation is a primary obstacle for both commercial and public data use.
- A balanced legal system for data utilization and protection is necessary.
Keywords:
data anonymizationdata linkingdata protectiondata sharinghealth care data demandprivacy actMore Related Videos
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