When patient data doesn’t travel with the patient

Picture a scene that every healthcare professional in Italy has experienced at least once.

A patient is discharged from hospital. They have a discharge letter, a couple of lab reports, a new therapy plan. They go home, visit their General Practitioner. The GP opens their clinical software and finds nothing. The patient reaches into their bag and pulls out some printed papers — or worse, says “they gave it to me, but I left it at home.” The GP has to reconstruct the clinical picture from scratch.

Same scene in reverse: the patient arrives at the Emergency Department. The doctor on duty has no access to their clinical history, doesn’t know what medications they’re taking, doesn’t know their allergies. In an emergency, every minute counts — and the minutes spent looking for information that already exists somewhere, in some system, are minutes taken away from care.

This is the interoperability problem, stripped of all jargon: clinical information about the patient exists, but it doesn’t travel with them. It stays locked inside systems that don’t talk to each other — the GP’s software, the hospital information system, the telemedicine platform, the pharmacy. Many drawers, no thread connecting them.

Hospital-territory integration is not just an organizational issue. It is first and foremost a data issue: if data doesn’t move, continuity of care remains a slogan.

The FSE: a health record that follows the citizen, not the facility

The tool Italy has chosen to solve this problem is called the Fascicolo Sanitario Elettronico — the FSE, Italy’s national Electronic Health Record. Everyone has heard of it, but it’s worth clarifying what it is and what it isn’t.

The FSE is the digital collection of all health data and documents relating to an individual — lab reports, prescriptions, discharge letters, vaccinations, emergency department records. The crucial point is that the FSE belongs to the citizen, not to the facility. It doesn’t matter if the lab report was done in Milan, the specialist visit in Rome, and the discharge in Cosenza: everything flows into the same record, accessible across the entire national territory.

Today we are in the 2.0 phase of the FSE. Until recently, the health record was essentially an archive of PDF documents — like a digital binder of photocopies. Useful for reading a report, but impossible to query intelligently.

The breakthrough of FSE 2.0 is the shift from documents to data. No longer just the PDF of a lab report, but the individual blood glucose value, the individual allergy, the individual medication — as structured data that a computer system can read, compare, and use to support clinical decisions.

There is another important change: since the Ministerial Decree of December 2024, all services delivered by private providers — including fully out-of-pocket care — must feed the FSE within 5 days. This means that for the first time, the health record will contain 100% of a patient’s clinical history, not just the public healthcare portion.

But all of this only works if systems speak the same language. And this is where interoperability comes in.

HL7 FHIR: the universal language of digital health

Interoperability is a complicated word for a simple concept: making healthcare IT systems understand each other. The GP’s software must be able to read the discharge letter produced by the hospital system, and vice versa.

This requires two things: a common format — how all systems structure information — and a common vocabulary — how everyone names the same things. If one system calls it “blood sugar” and another calls it “fasting plasma glucose,” the computer doesn’t understand they’re the same thing. And if one system stores the data in one format and another in a different format, they can’t exchange it.

The international standard chosen by Italy and Europe is called HL7 FHIR. Think of it as the Esperanto of digital health. It’s a common, open, free language used worldwide that defines how to represent every type of clinical information: a patient, an observation, a prescription, an appointment, an allergy.

In Italy, HL7 Italia — the national organization that adapts these standards to our context — has published over 20 technical guides that specify exactly how a lab report, a discharge letter, a prescription, an emergency department record, and more should be structured, so that all Italian NHS IT systems can exchange this information.

The key point is that interoperability is not a technical problem that only concerns IT specialists. It directly concerns patient safety: an allergy record that doesn’t reach the doctor in an emergency is not an IT problem — it’s a clinical risk.

Telemedicine: care leaves the hospital, and data must follow

Everything we’ve discussed so far becomes even more urgent when we talk about telemedicine. Because telemedicine, by definition, takes care beyond hospital walls — to the patient’s home, to the community clinic, to the GP’s office.

Italy’s National Recovery and Resilience Plan (PNRR) has invested heavily in the National Telemedicine Platform. Four core services are envisioned.

Televisit is a remote medical visit via video call — the doctor can examine the patient, prescribe medications and diagnostic tests.

Teleconsultation is a remote exchange between healthcare professionals — a specialist seeks a colleague’s opinion on a complex case.

Teleassistance is remote support for frail or chronic patients — typically provided by nurses or other healthcare professionals.

Telemonitoring is the collection of vital parameters directly from the patient’s home — blood pressure, blood glucose, oxygen saturation — using connected devices that send data to the physician.

The enormous risk of telemedicine was this: creating new silos. A telemonitoring app that doesn’t talk to the health record. A televisit whose data stays locked inside the regional platform. A vital parameter that the GP never sees.

The good news is that Italy’s National Telemedicine Platform was designed from the outset with FHIR as the native standard. It is the first national service where FHIR is not a future goal but today’s reality. HL7 Italia has published technical guides for all four telemedicine services — Televisit, Teleconsultation, and Teleassistance in 2025, Telemonitoring in early 2026 — all based on FHIR R4. And the architecture ensures that all clinical data generated through telemedicine flows into the FSE.

This means that a vital parameter measured at the patient’s home automatically becomes part of their clinical history — visible to the GP, the specialist, the Emergency Department. The data is born at home, but it enters the health record. This is what integrating hospital and territory actually looks like.

What this means for those who care for patients

Interoperability is not an IT affair. It is the precondition for our clinical work to function better. Every time we look for a report and can’t find it, every time a patient has to repeat a test because the previous result is trapped in an inaccessible system, every time we don’t know what medications a patient takes in an emergency — we are paying the price of lacking interoperability.

FSE 2.0, the Telemedicine Platform, standards like FHIR — these are not “IT projects.” They are infrastructures for continuity of care, the very same goal we pursue as clinicians.

There are three concrete things that each of us can do.

First: feed the health record. Every document that isn’t uploaded to the FSE is a piece of clinical history that gets lost. The decree mandates specific timelines — 5 days — but the motivation shouldn’t be regulatory. It should be clinical: the report we upload today could save a decision tomorrow.

Second: demand that our IT systems speak the same language. When a software doesn’t export data in a standard format, when it doesn’t integrate with the FSE, when it creates a silo — it’s not just a technical problem. It’s a quality-of-care problem. And as clinicians, we have both the right and the duty to flag it.

Third: take an interest. Interoperability is too important to leave to IT specialists alone. We need clinicians who understand the value of structured data, who participate in defining standards, who bring the patient’s perspective into technological choices.

Italy is on an ambitious journey — FSE 2.0, telemedicine built on FHIR, alignment with the European Health Data Space. It’s not a finished journey; it’s a transformation underway. But the direction is clear, and our role as healthcare professionals is essential to making it actually work.

Marco Pingitore is a Senior Clinical Psychologist (Dirigente Psicologo) at ASP Cosenza, member of HL7 Italia, and Italy’s Ambassador for Hospitals on FHIR.