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Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study

  • , Ismay A. E. de Beijer
  • , Emma C. Hardijzer
  • , Riccardo Haupt
  • , Desiree Grabow
  • , Julia Balaguer
  • , Edit Bardi
  • , Adela Cañete Nieto
  • , Audronė Ciesiūnienė
  • , Vanessa Düster
  • , Anna-Liesa Filbert
  • , Hannah Gsell
  • , Monika Kapitančukė
  • , Ruth Ladenstein
  • , Thorsten Langer
  • , Monica Muraca
  • , Selina R. van den Oever
  • , Sofie Prikken
  • , Jelena Rascon
  • , Maria Teresa Tormo
  • Anne Uyttebroeck, Gertrui Vercruysse, Helena J H van der Pal, Leontien C. M. Kremer
  • Princess Máxima Center for Pediatric Oncology
  • IRCCS Istituto Giannina Gaslini - Genova
  • Division of Childhood Cancer Epidemiology, German Childhood Cancer Registry, Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Center of the Johannes Gutenberg University Mainz
  • Hospital Universitari i Politecni La Fe, ES
  • Saint Anna Children’s Hospital
  • Department of Paediatrics and Adolescent Medicine, Johannes Kepler University Linz, Kepler University Hospital
  • Vilnius University Hospital Santaros Klinikos
  • St. Anna Children’s Hospital and Children’s Cancer Research Institute, Department of Studies and Statistics for Integrated Research and Projects, Department of Paediatrics, Medical University of Vienna
  • Childhood Cancer International (CCI) Europe
  • Campus Lubeck, Universitatsklinikum Schleswig-Holstein
  • University Hospitals Leuven, KU Leuven
  • Instituto de Investigación Sanitaria La Fe de Valencia
  • University Medical Center Utrecht, Wilhelmina Children’s Hospital, The Netherlands
  • Department of Pediatrics, Emma Children’s Hospital, Amsterdam UMC

Publikation: Beitrag in FachzeitschriftArtikelBegutachtung

Abstract

Purpose
To identify barriers and facilitators for implementing the Survivorship Passport (SurPass) v2.0 in six long-term follow-up (LTFU) care centres in Europe.

Methods
Stakeholders including childhood cancer survivors (CCSs), healthcare providers (HCPs), managers, information and technology (IT) specialists, and others, participated in six online Open Space meetings. Topics related to Care, Ethical, Legal, Social, Economic, and Information & IT-related aspects of implementing SurPass were evaluated.

Results
The study identified 115 barriers and 159 facilitators. The main barriers included the lack of standardised LTFU care in centres and network cooperation, uncertainty about SurPass accessibility, and uncertainty about how to integrate SurPass into electronic health information systems. The main facilitators included standardised and coordinated LTFU care in centres, allowing CCSs to conceal sensitive information in SurPass and (semi)automatic data transfer and filing.

Conclusions
Key barriers to SurPass implementation were identified in the areas of care, ethical considerations, and information & IT. To address these barriers and facilitate the implementation on SurPass, we have formulated 27 recommendations. Key recommendations include using the internationally developed protocols and guidelines to implement LTFU care, making clear decisions about which parties have access to SurPass data in accordance with CCSs, and facilitating (semi)automated data transfer and filing using Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR).

Implications for Cancer Survivors
The findings of this study can help to implement SurPass and to ensure that cancer survivors receive high-quality LTFU care with access to the necessary information to manage their health effectively.
OriginalspracheEnglisch
Seiten (von - bis)659-671
Seitenumfang13
FachzeitschriftJournal of Cancer Survivorship
Volume19 (2025)
Issue2
Frühes Online-Datum28 Nov. 2023
DOIs
PublikationsstatusVeröffentlicht - Apr. 2025

UN SDGs

Dieser Output leistet einen Beitrag zu folgendem(n) Ziel(en) für nachhaltige Entwicklung

  1. SDG 3 – Gute Gesundheit und Wohlergehen
    SDG 3 – Gute Gesundheit und Wohlergehen

Research Field

  • Exploration of Digital Health

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