Patient Generated Health Data Implementation Guide - Local Development build (v0.1.0) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions
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| Official URL: https://pghd.na.icar.cnr.it/ImplementationGuide/pghd | Version: 0.1.0 | |||
| Active as of 2026-03-19 | Computable Name: PGHD | |||
Scope
This Implementation Guide (IG) defines a structured framework of profiles, extensions, and terminology artifacts based on the HL7 FHIR R4 standard. Its primary goal is to standardize the management of Patient-Generated Health Data (PGHD), incorporating robust mechanisms for consent management and data authorization. The IG serves as a technical-operational blueprint for interoperable solutions in the collection, representation, and transmission of medical history (anamnesis), ensuring that every data exchange is governed by the patient's explicit preferences. This approach guarantees full alignment with the Italian FSE 2.0 (Fascicolo Sanitario Elettronico) model—specifically regarding privacy-by-design and consent enforcement—and international data quality standards.
Dependence
| IG | Package | FHIR | Comment |
|---|---|---|---|
  Patient Generated Health Data Implementation Guide | pghd#0.1.0 | R4 | |
 HL7 Terminology (THO) | hl7.terminology.r4#7.1.0 | R4 | Automatically added as a dependency - all IGs depend on HL7 Terminology |
  FHIR Extensions Pack | hl7.fhir.uv.extensions.r4#5.2.0 | R4 | |
 FHIR Tooling Extensions IG | hl7.fhir.uv.tools.r4#0.9.0 | R4 | for example references |
Package hl7.fhir.uv.extensions.r4#5.2.0 This IG defines the global extensions - the ones defined for everyone. These extensions are always in scope wherever FHIR is being used (built Mon, Feb 10, 2025 21:45+1100+11:00) |
Package hl7.fhir.uv.tools.r4#0.9.0 This IG defines the extensions that the tools use internally. Some of these extensions are content that are being evaluated for elevation into the main spec, and others are tooling concerns (built Tue, Dec 16, 2025 23:18+1100+11:00) |
Details
Cross-Version Analysis
This is an R4 IG. None of the features it uses are changed in R4B, so it can be used as is with R4B systems. Packages for both R4 (pghd.r4) and R4B (pghd.r4b) are available.
Implementation Guide
This is a Beta Implementation Guide for collecting patient medical history data and managing consent.
Authors and contributors
| Role | Name | Organization | |
|---|---|---|---|
| Author | Teresa Conte | ICAR-CNR | teresa.conte@icar.cnr.it |
| Mario Sicuranza | ICAR-CNR | mario.sicuranza@icar.cnr.it | |
| Contributor |
Intellectual Property Statements
This publication includes IP covered under the following statements.
- These codes are excerpted from Digital Imaging and Communications in Medicine (DICOM) Standard, Part 16: Content Mapping Resource, Copyright © 2011 by the National Electrical Manufacturers Association.Show Usage
- This material contains content from LOINC. LOINC is copyright © 1995-2020, Regenstrief Institute, Inc. and the Logical Observation Identifiers Names and Codes (LOINC) Committee and is available at no cost under the license. LOINC® is a registered United States trademark of Regenstrief Institute, Inc.Show Usage
- This material contains content that is copyright of SNOMED International. Implementers of these specifications must have the appropriate SNOMED CT Affiliate license - for more information contact https://www.snomed.org/get-snomed or info@snomed.org.Show Usage
- This material derives from the HL7 Terminology (THO). THO is copyright ©1989+ Health Level Seven International and is made available under the CC0 designation. For more licensing information see: https://terminology.hl7.org/license.htmlShow Usage