Conceptualization and Prototyping of an Electronic Health Record-enabled Survivorship Passport for Pediatric Oncology

The long-term care of Childhood Cancer Survivors (CCS) presents numerous
challenges that must be addressed. Ensuring a seamless transition
of information from pediatric oncological care to adult long term
follow-up (LTFU) care is therefore essential.
The development of the first version of the Survivorship Passport
(SurPass) in 2018 marked a fundamental step. It introduced a concise
document summarizing the oncological care each CCS received and
providing personalized recommendations for their LTFU care.
A key objective has been to integrate the SurPass into national or
regional Electronic Health Records (EHRs) to improve accessibility and
ensure the sustainability of collected data for future use. Six European
countries, including Austria, have committed to fulfilling this requirement
as part of a European project.
This thesis focuses on conceptualizing and prototyping the integration
of the SurPass into an EHR. With the AIT Austrian Institute of Technology
GmbH (AIT) tasked with implementing this use case in Austria, the
primary emphasis is on integrating the SurPass into the Austrian EHR
system, known as Elektronische Gesundheitsakte (ELGA). Additionally,
this thesis provides a guideline that can support other countries and institutions
in implementing the SurPass into various national or regional
EHR systems.
A prototype was developed based on the Outpatient Clinic Report
ELGA Clinical Document Architecture (CDA) document class. This prototype
facilitates the inclusion of the information provided in the SurPass
in a format suitable for uploading into the Austrian EHR. Furthermore,
the functionality to generate the SurPass CDA was incorporated into
the Survivorship Passport App (SUPA App), developed by AIT. This
app collects data to create the SurPass and provides personalized LTFU
recommendations for CCS.
Finally, it became possible to create a CDA document compatible with
the Austrian EHR system, ELGA, which includes all the information
contained in the SurPass. The implementation is based on Fast Healthcare
Interoperability Resources (FHIR) concepts, enabling the prototype
to be adaptable for use in other EHR systems that support FHIR-based
standards.