Knowledge and attitudes of the Italian population on sharing health data: a cross-sectional study

Abstract Background Healthcare digitization enhances data accessibility but faces data management and privacy challenges. The study sought to explore the Italian public’s understanding and views on storing and sharing health data for treatment and research purposes, as well as factors influencing their attitudes toward health data management and sharing. Methods A cross-sectional questionnaire assessed socio-demographic information, knowledge about health data sharing, and attitudes toward sharing data for treatment and scientific purposes. Descriptive analyses and multivariable logistic regressions were performed to examine the associations between sociodemographic factors and knowledge/attitudes about data storage and sharing. Results A total of 1,389 citizens participated. Most respondents (65.4%) thought that healthcare providers could access personal health data nationwide, while 94% expressed willingness to share personal health data nationwide. A high percentage of respondents (73%) fully agreed that storing and sharing personal health-related data could improve research and quality of care. Males and younger individuals (<41 years) were likelier to have higher data-sharing knowledge (adjusted Odds Ratio [adjOR] 1.50, 95% Confidence Interval (CI) 1.03 - 2.18, and adjOR 1.99, 95% CI 1.29 - 3.08 respectively). Lower educational-level respondents exhibited lower positive attitudes towards sharing health data for treatment and research purposes (adjOR 0.18, 95% CI 0.05-0.58 for high school, and adjOR 0.11, 95% CI 0.03-0.41 for middle school or lower, compared to those with a university degree). Conclusions The findings offer valuable perspectives for European policymakers, healthcare practitioners, and researchers who aim to enhance data handling, foster cooperation, and maximize the benefits of health data for tailored care and scientific progress. Key messages • Italian citizens show strong willingness to share health data nationwide for treatment and research, suggesting a favorable environment for collaborative healthcare initiatives. • Sociodemographic factors such as age and education level influence attitudes towards health data sharing, stressing interventions to ensure equitable access and participation in data-driven healthcare.