Use-Case 7: Updating the survivorship passport

The Survivorship Passport is a web-tool that provides instant access to the medical history of patients who ended a cancer therapy, making survivors and healthcare professionals aware of the potential risks or late effects stemming from the previous disease and treatment received. Currently supported by a number of University Hospitals  in six European countries: Austria, Belgium, Germany, Italy, Lithuania and Spain.

Although the web-based platform already exists, the currently running Pancaresurpass project is instrumental in defining further the specifications of the passport. See:  https://www.pancaresurpass.eu/

The Survivorship Passport is a tool to provide all European childhood cancer survivors with optimal long-term care. The SurPass encompasses all relevant treatment data and evidence-based care tailored on individual risk factors.

To achieve this, the SurPass platform currently uses a common template and internationally confirmed coding systems (e.g. ICD-O-3, ATC codes) for the Treatment summary S and EU-wide and international recommendations for the SCP.

The PanCareSurPass project will also develop recommendations for surveillance from the end of treatment until 5 years after diagnosis based on adaptation of existing IGHG (International Guideline Harmonization Group) and PanCare FollowUp recommendations.

In February 2025, a new HL7 Europe track was started to use the experience achieved in a European project, such as PanCareSurPass and national initiatives, to define a minimal, extensible, non-exhaustive European cancer data model that is: agnostic to the type of cancer, usable across different use cases, leverages the experiences of the European projects working with primary and secondary usage, takes into account the availability and usability of reliable data in electronic health record (EHR) systems, and allows its HL7 FHIR representation in the form of an HL7 FHIR Implementation Guide. Next step is the creation of the European Common Cancer Logical Model and on the HL7 Europe Cancer Common FHIR Implementation Guide. The possible connexion with EEHRxF has however not yet been considered.

SurPass generates thus a survivor-specific treatment summary and survivorship care plan (SCP) using algorithms that link treatment data with available follow-up recommendations. The SurPass has been implemented throughout 3 European health system scenarios (national European Health Information Systems (EHISs), regional EHISs, and cancer registries or hospital-based EHISs). The third scenario is the least favorable in terms of semi automated data input, interoperability, and data protection. Unlike the scenarios with nationally or regionally organized health data, this scenario requires the integration of data from a multitude of sources to generate a SurPass. Epidemiological data will need to be obtained from cancer or bone marrow transplant registries such as the German Childhood Cancer Registry, while disease and treatment-specific clinical data will need to be retrieved from hospital database.

HL7’s international patient summary (IPS) standard specifies an EHR extract containing essential health information intended for use in cross-border care scenarios.

Patients can trigger the creation of a Survivorship Passport

The Survivorship passport can receive data from data EHR complemented by data provided to cancer registry according to the EEHRxF

An HL7 Europe Cancer Common FHIR Implementation Guide will be instrumental in facilitating the reuse of the cancer registry data.

Efficient security and privacy core services need to be in place.

• Patient Summary
• Discharge Report

The yellow Button triggers the creation of a Survivorship passport by combining data from the EHR and the cancer registry.

The scenario depends on the existence or not of National/Regional dedicated information systems related to cancer. For this use case, we consider the scenario where data are provided by EHR systems but also considers the requirements of both the national/regional cancer registry and the patient survival passport. 

Use the same EEHRxF as input across EHR, cancer registry and Survivorship Passport. Patients take a more active role by accessing their data and triggering the creation of the passport

Enable cancer Survivors to use the yellow button to access and activate all available structured information to obtain updated information on guidelines and care Plan

• Number of Passports created

Import/export functionalities for EHR and cancer registries using the EEHRxF to the Passport.

Data available from EHR and cancer registry have been mapped and are interoperable .

The data model used by the cancer register is used as reference by the survivor platform.

EHR systems are EEHRxF compatible.

The passport system embeds the yellow button and can establish a trusted and secured connection with the patient allowing the upload of data.

The cancer register provides access to the patient data and allows its download in a standardised HL7 FHIR format.

The passport platform must support:

• Secure user authentication (for patient access)
• Upload and parsing of data from both EHR and cancer registry
• Data mapping to SurPass data model (e.g. ICD-O-3, ATC codes)
• Generation of SCP (Survivorship Care Plan) based on integrated data

Trusted and encrypted communication channels (e.g., HTTPS, OAuth2, FHIR APIs) must be in place between the EHR, cancer registry, and the SurPass platform.

Users need updated survivorship Passports

Possibility of submitting data without further transformation and automatically obtain an updated passport

• Compliance to EEHRxF to format by all cancer registries
• Even with EEHRxF, there may be differences in how clinical data are recorded, requiring mapping or transformation.

Charité, EHTEL, Sciensano

Yes an integrated management of identifiers is necessary for the whole process.

• A cancer survivor wants to obtain their Survivorship Passport with the recommendations for long-term follow-up by sharing their medical data
• The patient requests the creation of the passport. Both PS and discharge report are downloaded.The data available in the EEHRxF are reused to populate the appropriate data fields of the passport and uploaded on the passport secured website. Optionally the data available in the last available discharge report provides additional inputs for data fields not available in the patient summary. The complementary data provided previously to the cancer register are accessed by the patient , dowloaded and also uploaded to the passport. The integrated data form the treatment summary that reflects the patient’s cancer journey
• The Survivorship Passport platform generates the personalized care plan/recommendations that can be reviewed by the clinician and accessed and dowloaded by the survivor for ongoing health management.
• In the best case scenario, a direct communication through webservices is established between the EHR system, the Passport server and the cancer register thanks to a governed management of identifiers. In this case, the yellow button is only used to download the passport. In other cases, the actions need to be performed by the patient himself (with some orchestration process by the passport server).