Abstract

Public healthcare data have become crucial to the advancement of medicine, and recent changes in legal structure on privacy protection have expanded access to these data with pseudonymization. Recent debates on public healthcare data use by private insurance companies have shown large discrepancies in perceptions among the general public, healthcare professionals, private companies, and lawmakers. This study examined public attitudes toward the secondary use of public data, focusing on differences between public and private entities. An online survey was conducted from January 11 to 24, 2022, involving a random sample of adults between 19 and 65 of age in 17 provinces, guided by the August 2021 census. The final survey analysis included 1,370 participants. Most participants were aware of health data collection (72.5%) and recent changes in legal structures (61.4%) but were reluctant to share their pseudonymized raw data (51.8%). Overall, they were favorable toward data use by public agencies but disfavored use by private entities, notably marketing and private insurance companies. Concerns were frequently noted regarding commercial use of data and data breaches. Among the respondents, 50.9% were negative about the use of public healthcare data by private insurance companies, 22.9% favored this use, and 1.9% were "very positive." This survey revealed a low understanding among key stakeholders regarding digital health data use, which is hindering the realization of the full potential of public healthcare data. This survey provides a basis for future policy developments and advocacy for the secondary use of health data.

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