Info

Coordinating Institution
Istituto Superiore di Sanità-ISS
Contact person for health information portal
Luigi Palmieri
Governance and legal framework
Legal framework and institutional responsibilities

Italy has been moving towards the centralization of health data for many decades with the development of data registries, electronic health data and, in recent years, biobanks. These activities have required specific laws to protect personal and health data, thus the privacy of the citizens. The first Italian law protecting personal data was enacted in 1996 (L n.675 of 31 December 1996); it was modified in 2003 (the privacy code) and adjusted according to the EU law on personal data protection (2016/679). All registries, databases and the biobank held at ISS support the health information system by providing data for health monitoring and health system assessment.

Health information strategy

Data for health research and policy making are centralized at the Ministry of Health (MoH). ISS is the research body of the MoH and therefore hosts registries, biobank and other relevant databases, such as data from the Health Examination Survey (HES). Health reports are prepared and disseminated by the MoH, ISS and the National Institute of Statistics (ISTAT).

Health information sources and players
Main players (institutions)

Ministry of Health, the National Institute of Statistics and the National Institute of Health

Data protection
National data/privacy protection regulation and specific data access policies

MoH manages administrative health data for internal control; secondary use of administrative data (e.g. follow-up of morbidity and mortality of epidemiological studies by record linkage) is possible under approval of MoH and Ethics Committee for specific and ad hoc requests.

Hospital Discharge Records and Mortality individual data are available if epidemiological studies have been approved and are included in the National Statistical System.

Health information infrastructure and management
Health information infrastructure and management

Italy has national databases for hospital discharge records and medication prescriptions. Routine data linkage is possible at the MoH using the fiscal code, but not at ISS due to data anonymization of the databases provided to ISS. Ad hoc data linkage is also possible at local levels (single local health units-LHUs) but they do not provide a national picture of an event. Also, the LHUs use different software for data collection, rendering data linkage difficult.

Existence of a unique patient identifier or general personal identifier?
Yes
Name of identifier
fiscal code
Updated on 01 December 2023