This study aimed to explore the Italian population’s knowledge and perceptions regarding health data storage and sharing for treatment and research and to identify factors associated with citizens’ attitudes toward data storage and sharing.
A cross-sectional questionnaire, distributed to 1389 participants, collected sociodemographic information, assessed knowledge and gauged attitudes toward sharing data for treatment and research. Descriptive analyses and logistic regressions were performed to examine the associations between sociodemographic factors and knowledge/attitudes about data storage and sharing.
Most respondents wrongly believed that healthcare providers could access personal health–related data across the entire national territory, while 94% expressed willingness to share personal health data nationwide. A substantial 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. Lower educational-level respondents exhibited lower positive attitudes towards sharing health data for treatment and research purposes.
The results provide valuable insights for policymakers, healthcare professionals and researchers seeking to improve data management, promote collaboration and leverage the full potential of health data for personalized care and scientific advancements.