Trading-Off Privacy and Willingness to Share Personal Health Information: A Survey of Municipal Employees in Fukuoka City, Japan

Abstract

Background: The global adoption of Personal Health Records (PHRs) has prompted discussions about data privacy and sharing preferences. Despite Japan’s advancing digital health initiatives, public attitudes toward health data sharing remain understudied. Objectives: This study investigated the willingness to share personal health information among Fukuoka City employees as part of the “PHR Fukuoka Project.” Methods: A cross-sectional online survey was distributed to 11,604 municipal employees from February 1st - 20th, 2023. The survey assessed willingness to share personal and family health information across 36 scenarios, combining six purposes (health maintenance, medical care, emergencies, research, product development, and family sharing) with six recipient types (family, friends, healthcare providers, employers, government, and private companies). Sociodemographic factors and digital literacy were examined through logistic regression analysis. Results: Of 1241 respondents (10.6% response rate), 17.1% were willing to share personal health information, 37.3% were neutral, and 45.6% were opposed, with similar patterns for family health information (15.6%, 34.0%, 50.5%, respectively). Male gender (odds ratio [OR] 1.43, 95% confidence interval [CI] 1.12 - 1.82), smartphone use (OR 2.63, 95% CI 1.12 - 6.20), and health app usage (OR 1.41, 95% CI 1.09 - 1.83) predicted increased willingness to share. Respondents were most willing to share information for emergencies and medical care with family members and healthcare providers, while least willing to share for product development or with employers. Conclusions: While approximately half of respondents showed potential openness to sharing health information, privacy concerns persist. These findings suggest sufficient public support for digital health initiatives in Japan, though successful implementation requires careful consideration of sharing purposes and recipients, alongside robust privacy protections.