PanCareSurPass Project HL7 FHIR Implementation Guide
1.0.0 - release 150

PanCareSurPass Project HL7 FHIR Implementation Guide, published by PanCareSurPass Project. This guide is not an authorized publication; it is the continuous build for version 1.0.0 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/hl7-eu/pcsp/ and changes regularly. See the Directory of published versions

Plain Language Summary goes here

## PanCareSurPass FHIR IG - Home Page

Official URL: http://hl7.eu/fhir/ig/pcsp/ImplementationGuide/hl7.eu.fhir.pcsp | Version: 1.0.0
Active as of 2026-01-16 | Computable Name: PCSPImplementationGuide

### Scope

Specify HL7 FHIR logical models and profiles to be used within the European project PanCareSurPass. This project studies the scale-up and implementation of the digital Survivorship Passport to improve people-centred care for childhood cancer survivors.

### The PancareSurPass Project

#### Overview

PanCareSurPass is a EU funded Research and Innovation action aiming to study the scale-up and implementation of the digital Survivorship Passport to improve people-centred care for childhood cancer survivors.

PanCareSurPass will conduct a robust assessment of the implementation of the Survivorship Passport by first conducting a pre-implementation study in six countries (Austria, Belgium, Germany, Italy, Lithuania, Spain) representing three infrastructural scenarios in Europe. The Survivorship Passport is an innovative, digital tool, developed in previous EU-funded projects, that can be used to overcome well-known knowledge gaps to improve people-centred long-term survivorship care.

#### Objectives

The overall aim of PanCareSurPass is to leverage the digital transformation of healthcare to improve people-centred survivorship care by scaling up and implementing an interoperable SurPass v2.0 across Europe.

##### Preparation for Implementation

1. design and conduct a multi-country pre-implementation study to assess the barriers and facilitators for scaling up use of the SurPass v2.0

2. develop a practical Implementation Strategy informed by the findings of the pre-implementation activities and IT technical specifications for SurPass v2.0 ensuring interoperability and cybersecurity.

3. develop, test and launch SurPass v2.0 using the IT specifications developed use in the multi-country implementation study.

##### Implementation and evaluation

1. conduct a multi-country implementation study of SurPass v2.0 for people-centred care with >5-year CCS and to assess implementation in terms of people-centred care (e.g. activation, empowerment, satisfaction, increase in knowledge), feasibility and cost effectiveness.

2. conduct a parallel observational qualitative study using SurPass v2.0 for delivering people-centred survivorship care to <5-year CCS and >5-year CCS (but with limited treatment data available).

##### European Future Implementation & Achieving Impact

1. develop a Prediction Model using data from the pre-implementation activities and multi-country implementation study to enable healthcare decision-makers to assess the suitability and costs of SurPass v2.0.

2. host an Implementation Toolkit for further European implementation of the SurPass for people-centred care in various healthcare settings across Europe.

3. disseminate and communicate the importance of people-centred survivorship care and results of PanCareSurPass to key stakeholders to promote future implementation of SurPass v2.0 to improve people-centred survivorship care in Europe.

### Dependencies

IG | Package | FHIR | Comment
--- | --- | --- | ---
PanCareSurPass Project HL7 FHIR Implementation Guide | hl7.eu.fhir.pcsp#1.0.0 | R4 |
HL7 Terminology (THO) | hl7.terminology.r4#7.0.1 | R4 | Automatically added as a dependency - all IGs depend on HL7 Terminology
FHIR Extensions Pack | hl7.fhir.uv.extensions.r4#5.2.0 | R4 |
International Patient Summary Implementation Guide | hl7.fhir.uv.ips#2.0.0 | R4 |
HL7 Terminology (THO) | hl7.terminology.r4#6.5.0 | R4 |
International Patient Access | hl7.fhir.uv.ipa#1.1.0 | R4 |
HL7 Terminology (THO) | hl7.terminology.r4#6.2.0 | R4 |
SMART App Launch | hl7.fhir.uv.smart-app-launch#2.0.0 | R4 |
minimal Common Oncology Data Elements (mCODE) Implementation Guide | hl7.fhir.us.mcode#4.0.0 | R4 |
Genomics Reporting Implementation Guide | hl7.fhir.uv.genomics-reporting#2.0.0 | R4 |
US Core Implementation Guide | hl7.fhir.us.core#6.1.0 | R4 |
HL7 Terminology (THO) | hl7.terminology.r4#5.0.0 | R4 |
FHIR Extensions Pack | hl7.fhir.uv.extensions.r4#1.0.0 | R4 |
Bulk Data Access IG | hl7.fhir.uv.bulkdata#2.0.0 | R4 |
SMART App Launch | hl7.fhir.uv.smart-app-launch#2.1.0 | R4 |
VSAC | us.nlm.vsac#0.11.0 | R4 |
Structured Data Capture | hl7.fhir.uv.sdc#3.0.0 | R4 |
PHINVads | us.cdc.phinvads#0.12.0 | R4 |
IHE FormatCode Vocabulary | ihe.formatcode.fhir#1.1.0 | 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.ipa#1.1.0 This IG describes how an application acting on behalf of a patient can access information about the patient from an clinical records system using a FHIR based API. The clinical records system may be supporting a clinical care provider (e.g. a hospital, or a general practitioner), or a health data exchange, including a national health record system. (built Wed, Mar 19, 2025 14:34+0000+00:00)

Package hl7.fhir.uv.genomics-reporting#2.0.0 Guidelines for reporting of clinical genomics results using HL7 FHIR. (built Mon, May 9, 2022 16:52+0000+00:00)

Package hl7.fhir.uv.extensions.r4#1.0.0 This IG defines the global extensions - the ones defined for everyone. These extensions are always in scope wherever FHIR is being used (built Sun, Mar 26, 2023 08:46+1100+11:00)

Package hl7.fhir.uv.bulkdata#2.0.0 FHIR based approach for exporting large data sets from a FHIR server to a client application (built Fri, Nov 26, 2021 05:56+1100+11:00)

Package hl7.fhir.uv.sdc#3.0.0 The SDC specification provides an infrastructure to standardize the capture and expanded use of patient-level data collected within an EHR. This includes two components: * Support more sophisticated questionnaire/form use-cases such as those needed for research, oncology, pathology and other clinical domains. *Support pre-population and auto-population of EHR data into forms/questionnaires for uses outside direct clinical care (patient safety, adverse event reporting, public health reporting, etc.). (built Tue, Mar 8, 2022 18:32+0000+00:00)

Package ihe.formatcode.fhir#1.1.0 Implementation Guide for IHE defined FormatCode vocabulary. (built Thu, Feb 24, 2022 16:55-0600-06:00)

Package hl7.fhir.us.core#6.1.0 The US Core Implementation Guide is based on FHIR Version R4 and defines the minimum conformance requirements for accessing patient data. The Argonaut pilot implementations, ONC 2015 Edition Common Clinical Data Set (CCDS), and ONC U.S. Core Data for Interoperability (USCDI) v1 provided the requirements for this guide. The prior Argonaut search and vocabulary requirements, based on FHIR DSTU2, are updated in this guide to support FHIR Version R4. This guide was used as the basis for further testing and guidance by the Argonaut Project Team to provide additional content and guidance specific to Data Query Access for purpose of ONC Certification testing. These profiles are the foundation for future US Realm FHIR implementation guides. In addition to Argonaut, they are used by DAF-Research, QI-Core, and CIMI. Under the guidance of HL7 and the HL7 US Realm Steering Committee, the content will expand in future versions to meet the needs specific to the US Realm. These requirements were originally developed, balloted, and published in FHIR DSTU2 as part of the Office of the National Coordinator for Health Information Technology (ONC) sponsored Data Access Framework (DAF) project. For more information on how DAF became US Core see the US Core change notes. (built Fri, Jun 30, 2023 14:02+0000+00:00)

Package hl7.fhir.us.mcode#4.0.0 mCODE™ (short for Minimal Common Oncology Data Elements) is an initiative intended to assemble a core set of structured data elements for oncology electronic health records. (built Sun, Feb 16, 2025 19:03+0000+00:00)

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)

### 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 (hl7.eu.fhir.pcsp.r4) and R4B (hl7.eu.fhir.pcsp.r4b) are available.

### Global Profiles

There are no Global profiles defined

### IP statements

This publication includes IP covered under the following statements.

- The UCUM codes, UCUM table (regardless of format), and UCUM Specification are copyright 1999-2009, Regenstrief Institute, Inc. and the Unified Codes for Units of Measures (UCUM) Organization. All rights reserved. https://ucum.org/trac/wiki/TermsOfUse
  Show Usage
  - Unified Code for Units of Measure (UCUM): Bundle/BundleHulafe, ChemoUnitsVs... Show 8 more, CumulativeDoseChemoObsPcsp, Observation/ChemoHulafe-1-Ciclofosfamide-dose, Observation/ChemoHulafe-1-Citarabina-dose, Observation/ChemoHulafe-1-Metotrexato-dose, Observation/ChemoHulafe-1-Vincristina-dose, Observation/ObservationRadTotalDose-1, RadioUnitsVs and RadiotherapyEnergyOrIsotope
- 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
  - DICOM Controlled Terminology Definitions: RadiotherapyDoseTypeVs and TotalDoseRadObsPcsp
- 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
  - LOINC: Bundle/54, Bundle/BundleHulafe... Show 18 more, CancerStageGroup, CompositionSurpassPcsp, Condition/ConditionPrimCancerMainzZeisig, ConditionPrimaryCancerPcsp, DocRefDocType, DocumentReferencePcsp, FollowupSurPass, Observation/ObservationCBloodSCT-1-1, Observation/ObservationPrimCancerMainzZeisig, ObservationBloodAboRh, ObservationCodesDistantMetastasesVS, ObservationCodesPrimaryTumorVS, ObservationCodesRegionalNodesVS, ObservationCodesStageGroupVS, ObservationDiagnosisPcsp, TNMDistantMetastasesCategory, TNMPrimaryTumorCategory and TNMRegionalNodesCategory
- 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
  - SNOMED Clinical Terms&reg; (SNOMED CT&reg;): AffectedOrganVs, AmputationProcedureTypeVs... Show 66 more, BodyLocationQualifier, BodyLocationQualifierVS, Bundle/54, Bundle/BundleHulafe, CalculatedEstimatedVs, CancerStageGroup, CancerStagingSystemVS, ColostomyProcedureTypeVs, Condition/ConditionPrimCancerMainzZeisig, ConditionGvhdPcsp, ConditionOtherInfosPcsp, ConditionPrimaryCancerPcsp, ConditionSecondaryCancerPcsp, ConditionToxicityPcsp, CumulativeDoseChemoObsPcsp, FollowupSurPass, FromToPosteriorAnteriorVs, GastrostomyProcedureTypeVs, GradeVS, HereditaryPredispositionDisease, LeftRightBiUnilateralVS, MorphologicAbnormalityVS, NotAffectedOrgan, Observation/ChemoHulafe-1-Ciclofosfamide-dose, Observation/ChemoHulafe-1-Citarabina-dose, Observation/ChemoHulafe-1-Metotrexato-dose, Observation/ChemoHulafe-1-Vincristina-dose, Observation/ObservationCBloodSCT-1-1, Observation/ObservationRadTotalDose-1, Observation/ObservationRiskFactor-1, Observation/ObservationRiskFactor-2, Observation/ObservationRiskFactor-3, Observation/ObservationRiskFactor-4, ObservationHereditaryPredispositionPcsp, ObservationRiskFactor, OtherInfosConditionVS, Procedure/ProcedureRadio-1, Procedure/ProcedureSTC-1, Procedure/ProcedureTransfusion-1, ProcedureCVCOtherInfosPcsp, ProcedureCryopreservationOtherInfosPcsp, ProcedureFltPcsp, ProcedureRadiotherapyBoostPcsp, ProcedureRadiotherapyPcsp, ProcedureRadiotherapyShieldingPcsp, ProcedureSctPcsp, ProcedureSctProphylaxisPcsp, ProcedureSurgeryPcsp, ProcedureTransfusionOtherInfosPcsp, ProstheticProcedureTypeVs, RadiotherapyDoseTypeVs, RadiotherapyEnergyOrIsotope, RadiotherapyIsotopes, RadiotherapyTypeVs, RelapseTypeVS, SacrifiedOrgan, SacrifiedOrganVs, SctGvhdType, SctProphylaxisCathegory, SctProphylaxisType, SctTypeVs, SurgicalActionVs, TNMDistantMetastasesCategory, TNMPrimaryTumorCategory, TNMRegionalNodesCategory and TotalDoseRadObsPcsp
- 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.html
  Show Usage
  - Condition Clinical Status Codes: ActiveResolvedConditionVS, Bundle/54... Show 4 more, ConditionPrimaryCancerPcsp, ConditionToxicityPcsp, PreviousStatus and ProcedureFltPcsp
  - DataAbsentReason: Bundle/54, CalculatedEstimatedVs... Show 26 more, ConditionGvhdPcsp, ConditionPrimaryCancerPcsp, ConditionSecondaryCancerPcsp, ConditionToxicityPcsp, CumulativeDoseChemoObsPcsp, FltPlanType, ICD10HereditaryPredisposition, ICDO3MorphologyVs, LeftRightBiUnilateralVS, NotApplicableUnknownVs, NotPerformedUnknownVs, ObservationHereditaryPredispositionPcsp, OtherUnknownTextVs, PlanDefinitionFltPcsp, ProcedureRadiotherapyBoostPcsp, ProcedureRadiotherapyPcsp, ProcedureRadiotherapyShieldingPcsp, ProcedureSurgeryPcsp, ProsthesisTypeVs, RadiotherapyTypeVs, SctAcuteGvhdGrade, SctChronicGvhdGrade, TotalDoseRadObsPcsp, ToxicitySeverityVS, UnknownOtherVs and VsRadiotherapy
  - Observation Category Codes: CumulativeDoseChemoObsPcsp, Observation/ObservationRadTotalDose-1 and TotalDoseRadObsPcsp
  - PlanDefinitionType: FltPlanType, PlanDefinition/3976 and PlanDefinitionFltPcsp
  - ActCode: Bundle/54, Bundle/BundleHulafe, Encounter/EncHulafe-1, Encounter/EncounterPrimCancerMainzFischer and Encounter/EncounterPrimCancerMainzZeisig
  - NullFlavor: Bundle/54, Bundle/BundleHulafe... Show 7 more, Condition/ConditionPrimCancerMainzFischer, Condition/PrimaryCancerHulafe-1, ConditionPrimaryCancerPcsp, ObservationHereditaryPredispositionPcsp, OrphaHereditaryPredisposition, OtherUnknownTextVs and UnknownOtherVs
  - RoleCode: Patient/PatientCineca and Patient/PatientHulafe