Italy

Healthcare System

Italy employs a universal healthcare system, known as the National Health Service (Servizio Sanitario Nazionale, or SSN), providing coverage for all citizens and residents. Since 2013, free healthcare has been extended to EU citizens, while non-EU visitors are required to cover their own treatment costs.

The SSN is managed both by the central government and regional authorities, consisting of 19 regions and two autonomous provinces. The central government stipulates the "Essential Levels of Care" (LEAs), a national benefits package guaranteed to all citizens and registered foreign residents. Regions, meanwhile, administer the delivery of health services.

LEAs encompass hospital care, outpatient health services, pharmaceuticals, and community health services. Over-the-counter pharmaceuticals and dental care, however, have limited coverage. The system is primarily funded by national and regional taxes, with the central government matching regional resources to ensure age-adjusted, per-capita funding.

Access to health services necessitates registration with a general practitioner or a pediatrician (for children up to age 14), who serve as gatekeepers and coordinators of care. This primary care focus is fundamental to the SSN.

The healthcare quality and access can vary across regions, with the northern and central regions generally perceived as providing higher quality care due to more advanced technologies and capacities. This results in patients often traveling to these regions for services. Despite these disparities, a strong commitment to equity in healthcare provision persists nationwide.

Regarding healthcare data, each citizen has a unique health identifier for accessing their electronic health records (EHRs), facilitating efficient care coordination. Health registries and claims data are electronically managed, though digital health system usage varies across regions.

Administrative or Claims Data

Hospital Discharge Database (SDO)

Primary Purpose: Store administrative information about hospital discharges in all national public or private hospitals.

Sponsor, manager or home institution: Ministry of Health.

Type of information: Patient's personal characteristics (including age, sex, residence, level of education), characteristics of the hospitalization (for example institution and discharge discipline, hospitalization regime, method of discharge, booking date, priority class of hospitalization) and clinical features (e.g. main diagnosis, concomitant diagnoses, diagnostic or therapeutic procedures). Data Dictionary: Hospital Discharge Database (SDO).

Available type of information: Claims data by region, national and regional claims by DRG, MDC, procedures, as well as various data about the length of stay for all these categories, among other information.

Source of Information: Information is sent to the SDO via form by public and private healthcare providers.

Data level: Patient level.

Available data level: Regional and national level.

Number of Records: 98.9% of institutions covered as of 2020.

Date Range: 2001 onwards.

Open data access: Partially publicly available [1]. Instructions to request data for restricted content [2].

Information/Contact for data request: Contact information [3].

Registries

I.Stat - Causes of Death

[4]

Primary purpose: Provide access to data collection results from all statistical themes, including health and healthcare.

Sponsor, manager or home institution: National Institute of Statistics (Istat).

Available type of information: Information on cause of death per age, sex, region, per number of inhabitants, among other information.

Source of information: Death certificates sent by municipalities to Istat.

Data level: Patient level.

Available data level: Regional and national level.

Number of Records: All death certificates in Italy sent to Istat.

Date Range: 1923 onwards.

Cancer Areas of Interest (ICD): Malignant neoplasm of lip, oral cavity, pharynx; oesophagus; stomach; colon, rectum and anus; liver; pancreas; larynx; trachea, bronchus, lung; skin; breast; cervix uteri; other and unspecified parts of uterus; ovary; prostate; kidney; bladder; brain and central nervous system; thyroid; hodgkin disease and lymphomas; leukaemia; lymph./haematopoietic tissue; other malignant neoplasms.

Open data access: Partially publicly available [5]. Instructions to request data for restricted content [6].

Information/Contact for data request: Contact information [7].

I.Stat - Smoking Habits

Primary purpose: Provide access to data collection results from all statistical themes, including health and healthcare.

Sponsor, manager or home institution: National Institute of Statistics (Istat).

Type of information: Surveys used to collect data [8].

Available type of information: Smoking habit (smoker, never smoker, former-smoker), number of cigarettes per day, the average number of cigarettes, all organized per age, educational level, occupation, and region.

Source of information: Survey carried out on a sample of about 25,000 families distributed in about 800 Italian municipalities of different demographic sizes.

Data level: Patient level.

Available data level: Regional and national level.

Number of Records: 25,000 families every year.

Date Range: 1993 onwards.

Cancer Areas of Interest: Cancers of the oral cavity and pharynx; esophagus; stomach; colon and rectum; liver; pancreas; larynx; lung, bronchus, and trachea; kidney and renal pelvis; urinary bladder; and cervix.

Open data access: Partially publicly available [9]. Instructions to request data for restricted content [10].

Information/Contact for data request: Contact information [11].

Carcinogens Database

Primary purpose: Store information about carcinogenic substances.

Sponsor, manager or home institution: National Center for Chemicals, Cosmetics and Consumer Protection; Instituto Superiore di Sanità (ISS).

Type of information: Names, synonyms, family, identification codes, category, hazard class, degree of evidence of carcinogenicity, regulatory provisions, among other information.

Source of information: Unknown.

Data level: N/A.

Number of Records: Unknown.

Date Range: N/A.

Cancer Areas of Interest: Unknown.

Open data access: Publicly available [12].

Information/Contact for data request: Contact information [13].

Compilation: Italian Association of Cancer Registries (AIRTUM)

Primary purpose: Systematically collect and archive cancer registries from all regions of Italy.

Sponsor, manager or home institution: Italian Association of Cancer Registries.

Type of database: Cancer registries with incidence data and mortality data [14].

Source of information: Cancer registries from all regions of Italy. Information is collected from these registries and is validated for their quality and completeness [15].

Data level: Patient level.

Number of Records: Over 3,500,000 cancer cases in total.

Date Range: Varies.

Cancer Areas of Interest: Varies.

Open data access: Not publicly available. Instructions to request data for restricted content [16].

Information/Contact for data request: Contact information [17].

Compilation: Open Databases

Primary purpose: Offer publicly available databases about multiple subjects.

Sponsor, manager or home institution: Ministry of Health.

Type of databases: Databases that include information about distribution, sale, logistics and authorizations of drugs, among other information.

Source of information: Unknown.

Data level: Regional level; national level.

Number of Records: Unknown.

Date Range: Varies.

Cancer Areas of Interest: Varies.

Open data access: Publicly available [18].

Information/Contact for data request: Contact information [19].

Cancer-related Patient Associations and Resources

Compilation: ESMO Patient Guides

Sponsor, manager or home institution: European Society for Medical Oncology.

Primary purpose: To translate complex medical language into understandable information for patients.

Available guides: Cancer Treatments During the COVID-19 Pandemic; Cancer Pain; Survival; Cervical Cancer; Endometrial Cancer; Breast Cancer; Ovarian Cancer; Non-small cell lung cancer; Cancer of the Biliary Tracts; Glioma; LAM; Follicular Lymphoma; CML; Multiple Myeloma; Soft Tissue Sarcomas; Sarcomas of Bone; Head and Neck Cancer.

Type of information: Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.

Access to information: List of guides [20].

Latest Policymaking Initiatives

Profili di Salute

Sponsor, manager or home institution: Instituto Superiore di Sanità (ISS); Ministry of Health.

Primary purpose: Allow free access to health data displayed in graphics and tables.

Type of information: Mortality by age, gender and cause of death; Admissions by gender, age and discharge diagnosis; tumor incidence by gender, age and disease diagnosis; other indicators.

Level: National level.

Access to information: Access Information [21].

Italian Association of Cancer Registries (AIRTUM) Reports

Sponsor, manager or home institution: Italian Association of Cancer Registries (AIRTUM).

Primary purpose: Offer publicly available oncological information to improve cancer management.

Type of information: Reports on incidence of cancer, cancer as cause of death, cancer survival, risk behaviors, and others, in various levels of detail, regional and national, for various cancer types.

Data level: Regional and national level.

Access to information: Access Information [22].

Quality of Life and Palliative Care Research

List of Article: Quality of Life [term=Quality+of+Life%5BMeSH%5D+AND+Italy%5BAffiliation%5D+AND+cancer&filter=pubt.clinicaltrial&filter=pubt.meta-analysis&filter=pubt.randomizedcontrolledtrial&filter=pubt.systematicreview]; Palliative Care [23]. List of Articles About Quality of Life

List of Articles About Palliative Care