Italy
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Cancer Centers
Centro di Riferimento Oncologico di Aviano
IRCCS Ospedale Policlinico San Martino
European Institute of Oncology
Fondazione IRCCS- Istituto Nazionale dei Tumori di Milano
Istituto Oncologico Veneto IRCCS-IOV
Istituto Nazionale Tumori -IRCCS 'Fondazione G.Pascale'
Istituto Tumori Giovanni Paolo II, Istituto di Ricovero e Cura a Carattere Scientifico
IRCCS Centro di Riferimento Oncologico della Basilicata
Mediterranean Institute of Oncology
Sacro Cuore - Don Calabria Hospital
IRCCS - Romagna Institute for the Study of Cancer 'Dino Amadori'
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Istituto Nazionale Tumori Regina Elena & Istituto Dermatologico San Gallicano
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.
Data access: Partially publicly available [1]. Instructions to request data for restricted content [2].
Contact information: Information [3].
Registries
I.Stat - Causes of Death
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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.
Data access: Partially publicly available [5]. Instructions to request data for restricted content [6].
Contact information: Information [7].
I.Stat - Smoking Habits
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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.
Data access: Partially publicly available [9]. Instructions to request data for restricted content [10].
Contact information: 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.
Data access: Publicly available [12].
Contact information: 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.
Data access: Not publicly available. Instructions to request data for restricted content [16].
Contact information: 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.
Data access: Publicly available [18].
Contact information: Information [19].
Clinical Practices Guidelines
Compilation: AIOM Guidelines
Sponsor, manager or home institution: Associazione Italiana di Oncologia Medica (AIOM).
Primary purpose: To improve and standardize clinical practice, offer the best care to patients nationwide, and provide evidence-based reference for national and regional institutions, regulatory bodies, and payers, with a focus on oncology and pain therapy in cancer patients.
Type of information: Clinical recommendations, management, palliative care, quality of life, epidemiology and diagnoses of various types of cancer.
Access to information: List of guidelines [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.
Data level: National level.
Access to information: Access Information [21].
Reports: Italian Association of Cancer Registries (AIRTUM)
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].
Report: Provisions to guarantee access to palliative care to pain management
Sponsor, manager or home institution: Ministero della Salute.
Primary purpose: To outline the legislative framework and establishment of palliative care networks, ensuring access to palliative care for all citizens, preserving patient dignity, and guaranteeing the quality of life until the end.
Type of information: Place of death for patients diagnosed with cancer; The number of deaths in hospital with a primary diagnosis of cancer; Number of patients with a primary diagnosis of cancer who died in the acute ward of a hospital; Number of deaths with primary diagnosis of cancer in acute wards; Percentage change in the number of deceased by the department with a primary diagnosis of cancer in acute wards; Ratio % between the number of patients admitted to hospices with assistance ended due to death due to cancer and the number of deaths due to cancer; Percentage of cancer patients with hospice admissions; Trend of the percentage distribution of hospice admissions by duration classes for cancer patients; Percentage distribution of some macro services provided in Hospice - cancer patients; Number of deaths from cancer assisted by the palliative care network at home or in hospices on the number of deaths from cancer; Percentage change in the ratio between the annual number of days of effective palliative care assistance provided at home for cancer patients and the number of cancer deaths.
Data level: National and regional level.
Access to information: Access Information [23].
Report: Screening programs in Italy
Sponsor, manager or home institution: Osservatorio Nazionale Screening; Ministero della Salute.
Primary purpose: Assesses annual cancer screening programs in Italy, indicating substantial participation in mammography and cervical screenings, significant progress in colorectal screening, and disparities in coverage between regions.
Type of information: Effective extent of mammography, cervical and colorectal screening; Participation (%) in screenings according to the country of origin; Waiting times; Invitations; Availability of pre-operative diagnosis; Conservative surgery; Total number of persons invited Number of persons participating in the invitation; Acceptance of the invitation; Number of persons examined in the period; Proportion of persons recalled for further investigation; Benign biopsies; Cancer identification rate; Invasive cancer identification rate; Percentage of conservative surgical treatment in invasive tumors; Mammography performed within the last 2 years; Fecal occult blood test programs - Main results in the two-year period; Programs with Rectosigmoidoscopy; Examination for the prevention of colorectal cancer in the recommended times (%) persons; Lesions with CIN2+ histology identified; Introduction of the human papilloma virus (Hpv) test as a screening test; Preventive test coverage in the last 3 years.
Data level: National and regional level.
Access to information: Access Information [24].
Report: EU Country Cancer Profile 2023
Sponsor, manager or home institution: OECD and European Commission.
Primary purpose: To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.
Type of information: National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.
Data level: National level.
Access to information: Access Information [25].
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 [26].
Patient Association: Italian GIST Foundation ETS
Primary purpose: To spread knowledge about rare GIST cancers, raise awareness, and improve the diagnostic and therapeutic path for Gastrointestinal Stromal Tumor (GIST) patients while promoting research and providing information to those affected by this disease.
Contact information: Information [27].
Patient Association: NET Italian Association of Patients with Neuroendocrine Tumors (Italy)
Primary purpose: To promote health education and information about neuroendocrine tumors, provide support to individuals affected by these pathologies, and encourage studies, research, and dissemination of results for the benefit of the community, with a focus on raising awareness of the challenges associated with these tumors.
Contact information: Information [28].
