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Childhood Cancer Survivorship Passport Challenges in the European Health Data Space.

Authors :
GAZZARATA, Roberta
STRÜBIN, Michael
CHRONAKI, Catherine
CANGIOLI, Giorgio
SARACENO, Davide
SCHREIER, Günter
BEYER, Stefan
TRAUNER, Florian
GREDINGER, Gerald
LADENSTEIN, Ruth
de BEIJER, Ismay AE
CAVALCA, Giacomo
TRINKUNAS, Justas
BELTRAN, Lucas CERVERO
VANAUTGAERDEN, Mark
KOCK-SCHOPPENHAUER, Ann-Kristin
NEUMANN, Anke
MURACA, Monica
FILBERT, Anna-Liesa
HAUPT, Riccardo
Source :
Studies in Health Technology & Informatics; 2024, Vol. 316, p1302-1306, 5p
Publication Year :
2024

Abstract

Innovation in cancer therapy has increased childhood cancer survival rates. However, survivors are still at risk of developing late effects. In the digital transformation of the health sector, the Survivorship Passport (SurPass) can support long-term follow-up care plans. Gaps in seamless connectivity among hospital departments, primary care, combined with the time of health professionals required to collect and fill-in health data in SurPass, are barriers to its adoption in daily clinical practice. The PanCareSurPass (PCSP) project was motivated to address these gaps by a new version of SurPass (v2.0) that supports semi-automatic assembly from organizational Electronic Health Record (EHR) systems of the treatment summary data using HL7 FHIR, to create SurPass, and to link it to regional or national digital health infrastructures in six European countries. In this paper we present the methodology used to develop the SurPass technical implementation strategy with special focus on the European Health Data Space (EHDS). The recently provisionally approved EHDS regulation instruments a digital health data ecosystem with opportunities for cost-effective SurPass implementation across Europe. Moving forward, a European HL7 FHIR SurPass Implementation Guide along with synthetic data sets, and validation tools can enrich the European Electronic Health Record Exchange Format (EEHRxF) with use cases on health & wellness of childhood cancer survivors. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
09269630
Volume :
316
Database :
Complementary Index
Journal :
Studies in Health Technology & Informatics
Publication Type :
Academic Journal
Accession number :
179286478
Full Text :
https://doi.org/10.3233/SHTI240651