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Dr Maria Montessori was appointed co-director of Rome’s new Scuola Ortofrénica, dedicated to training teachers to work with children who had cognitive and developmental challenges. Starting in 1899, her techniques helped the children with difficulties catch up with those without. So she wondered how much normal schooling was holding back normal children. Montessori schools would eventually teach many technology founders including Larry Page and Sergey Brin (Google), Jeff Bezos (Amazon) and Jimmy Wales (Wikipedia).
Country’s healthcare system in a nutshell
Italy operates a Italy’s regionalised National Health Service (Servizio Sanitario Nazionale, SSN) , which has provided universal coverage to all citizens and legal residents since 1978. The SSN is organised under the national Ministry of Health and administered on a regional basis. The central government oversees the system, Central government establishes the national benefits package , and allocates funding to the regions. The regions , which are responsible for financing, planning, and delivering healthcare services at the local level.
The SSN is primarily funded through a combination of regional and national taxes, with pooled funds managed at the national level. Each region’s share of funding is determined by a formula that takes into account epidemiological factors such as population age structure and other epidemiological considerations. This formula is agreed annually between the national government and the regions at the State-Regions Conference, an intergovernmental forum for decision-making. The national government provides additional financial support through an equalisation fund, sourced from national value-added tax, to cover the gap between each region's estimated financial needs and their own revenue.
Out-of-pocket payments (OOP) payments in Italy are significantly higher than the EU EU’s average. For instance, in In 2019, Italy’s OOP in Italy accounted for 23.3% of total health expenditure , compared to while the EU average of was 15.4%. While some services, such as medications, outpatient specialist visits, and diagnostic tests, require co-payments, the The majority of OOP spending in Italy goes towards direct payments for services , not covered by the SSN particularly outpatient medical care and over-the-counter medications not covered by the SSN.. Remaining OOP are co-payments for covered services such as medications, outpatient specialist visits, and diagnostic tests (World Health Organization, 2022)According to the most recent data from 2010, health insurance covered .
Health insurance covers the entire population of Italy. This coverage encompasses both those who are members of health insurance schemes and those who have free access to state-provided healthcare services (Our World in Data, n.p.).
Public vs private
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The national PHR
History
From a normative perspectiveFascicolo Sanitario Elettronico (FSE), the Italian National PHR, known as the ‘Fascicolo Sanitario Elettronico (FSE)’ has been was introduced from Art. 12 of Law Decree 18 Oct 2012 n. 179 ( “decreto crescita”, converted into law 17 Dec 2012, n. 221). This . The law established that:
Each region had to create and implement a PHR by June 20, 2015.
The user interfaces, systems, and software must ensure full interoperability at regional, national, and European levels.
Even Some regions had started local FSE projects before this law, some regions had already initiated projects to develop local FSEs, such as the Emilia Romagna region (Posteraro, 2021).
In more recent years, Italy wrote, as requested by the EU recovery package Next Generation EU (NGEU), the National Plan of Recovery and Resilience (PNRR), in which each country has to define a plan of reforms and investments for the period 2021-2026. The Italian PNRR was officially approved by the Italian Government on the 13th of July 2021.
The PNRR allocates approximately Italy’s National Plan of Recovery and Resilience (PNRR) allocated 2.5 billion euros for digital health, with 1.3 billion euros dedicated to establishing a national data infrastructure for the FSE. This The infrastructure aims to be homogeneous across the country and to include the entire clinical history of patients. The budget is for 2021-2026 (Permanent Conference for Relations between the State, the Regions, and the Autonomous Provinces, 2022).
Region | Who built the PHR | Public / Private |
|---|---|---|
Abruzzo | Has not developed its FSE. According to the ‘subsidiarity regime,’ the region is using the nationally available infrastructure with basic features. | |
Basilicata | Region Basilicata | The region built the PHR Built in-house |
Bolzano (autonomous province) | Autonmous province of Bolzano | The autonomous province built the PHR InBuilt in-house |
Calabria | Has not developed its FSE. According to the ‘subsidiarity regime,’ the region is using the nationally available infrastructure with basic features. | - |
Campania | Has not developed its FSE. According to the ‘subsidiarity regime,’ the region is using the nationally available infrastructure with basic features. | - |
Emilia-Romagna | The region Region is the main shareholder | |
Friuli Venezia Giulia | Company owned by the region | |
Lazio | Engineering Ingegneria Informatica - won tender in 2015 | Private company |
Liguria | The region Region is the main shareholder | |
Lombardia | The region is the main shareholder | |
Marche | Cineca is a non-profit consortium, made up of 69 Italian universities, 27 national public research centres, the Italian Ministry of Universities and Research and the Italian Ministry of Education | |
Molise | Under development, no specified company. | - |
Piemonte | Consortium of public entities | |
Puglia | The region Region is the main shareholder | |
Sardegna | Private company | |
Sicilia | Has not developed its FSE. According to the ‘subsidiarity regime,’ the region is using the nationally available infrastructure with basic features. | - |
Toscana | Private company | |
Trento (autonomous province) | The autonomous province of Trento Region is the main shareholder | |
Umbria | Region Umbria | The region built the PHR Built In-house |
Valle d’Aosta | Region Valle d’Aosta | The region built the PHR Built In-house |
Veneto | Public consortium of the 9 Local Health Authorities and the 2 Hospital Companies of the Region. The regional government, through its health structures, is the main shareholder of the consortium. |
Features
Even though all regional Regional Fascicolo Sanitario Elettronico (FSE) systems must adhere to the national minimum standards set by law for data sharing and basic features. However, each region’s FSE is still distinct. As a result, the functionalities of the Italian FSE vary , with variation across regions, making and it challenging is therefore difficult to define a uniform set of features.
According to the legislation, the FSE must include a set of "core" elements, such as The core elements of the FSE as stated in the national legislation include: patient demographics, clinical reports (e.g., specialist visit reports, test results, radiology), A&E reports, discharge letters, organ donation consent, a patient summary, and a pharmaceutical dossier.
The pharmaceutical dossier is updated by pharmacies and . It helps track a patient's medication history, assess the appropriateness of new prescriptions, and monitor adherence to therapies. However, this feature is still underdeveloped in many regions.
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Patient ability to add notes and clinical documents, which promotes self-management and empowerment. Some argue that this should become a core feature.
In-home assistance programs.
Care plans.
Medical certificates.
Vaccination records.
Recent legislation, the Decreto Rilancio (2020), mandates the integration of the FSE with other national systems, including:
The Transplants Information System (Sistema Informativo Trapianti - SIT), a digital platform for managing data related to the National Transplants Network.
The Italian Vaccine Registry.
Regional appointment management systems (CUPs).
Challenges and areas for improvement
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As of the third trimester of 2023, nearly all Italian citizens had have activated their Fascicolo Sanitario Elettronico (FSE), with 57.66 million users out of a total population of 58.85 million. However, login and usage rates remain low.
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In 10 regions (including one autonomous province), no healthcare facilities contributed data to their citizens' FSE.
In six regions, less than 60% of healthcare facilities participated.
Only in four regions did more than 60% of facilities add data to the FSE.
(AGID Agenzia per l’Italia Digitale, 2023-2024).
As of May 2024, the Government has released new statistics on the percentage of Regions and Autonomous Provinces where the FSE is configured to store specific types of documents. However, while the system is capable of storing these documents, their actual presence in a patient’s record depends on the particular healthcare facility involved. All of them are configured to store: discharge letters, prescriptions, referrals, lab results, imaging results, outpatient appointment reports, and emergency admission reports. More than half also have: pathology reports, patient summaries, vaccination certificates, documents attesting specialist care service have been provided, documents attesting the prescribed medication has been bought, and personal health diary.
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(AGID Agenzia per l’Italia Digitale, 2023-2024)
Screenshots
Note: the screenshots refer to the FSE of the Emilia Romagna region, which, at the moment, is the one showing the highest utilisation.
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Lepida’s platform for Emilia-Romagna in Italy
Bibliography
AGID Agenzia Per l’Italia Digitale
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, n.d.
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Fascicolo Sanitario Elettronico - Monitoring. Available at: https://www.fascicolosanitario.gov.it/en/monitoring (
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Stato dell’arte sulle iniziative nazionali relative allo sviluppo di sistemi ICT interoperabili per la Salute Digitale. Available at: https://www.researchgate.net/profile/Mario-Ciampi/publication/334204495_Stato_dell'arte_sulle_iniziative_nazionali_relative_allo_sviluppo_di_sistemi_ICT_interoperabili_per_la_Salute_Digitale/links/5d1cc763299bf1547c94fbd3/Stato-dellarte-sulle-iniziative-nazionali-relative-allo-sviluppo-di-sistemi-ICT-interoperabili-per-la-Salute-Digitale.pdf (
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. Digital Health. Presentation to the Permanent Conference for Relations between the State, the Regions, and the Autonomous Provinces, Rome, 2 March 2022. REP. ATTI No. 22/CSR of 2 March 2022. Available at: https://www.statoregioni.it/it/conferenza-stato-regioni/sedute-2022/seduta-del-02032022/atti/repertorio-atto-n-22csr/ (
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