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

doi:10.1007/s11764-023-01498-8

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

Digital Health Information Systems

Princess Máxima Center for Pediatric Oncology
Istituto Giannina Gaslini
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
St. 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

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Pages (from-to)	659-671
Number of pages	13
Journal	Journal of Cancer Survivorship
Volume	19 (2025)
Issue number	2
Early online date	28 Nov 2023
DOIs	https://doi.org/10.1007/s11764-023-01498-8
Publication status	Published - Apr 2025

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Research Field

Exploration of Digital Health

Keywords

Paediatric oncology
Long-term follow-up care
Survivorship
Aftercare
Cancer survivors
Passport SurPass
Care plan

Access to Document

10.1007/s11764-023-01498-8Licence: CC BY

Cite this

, de Beijer, I. A. E., Hardijzer, E. C., Haupt, R., Grabow, D., Balaguer, J., Bardi, E., Nieto, A. C., Ciesiūnienė, A., Düster, V., Filbert, A.-L., Gsell, H., Kapitančukė, M., Ladenstein, R., Langer, T., Muraca, M., van den Oever, S. R., Prikken, S., Rascon, J., ... Kremer, L. C. M. (2025). Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study. Journal of Cancer Survivorship, 19 (2025)(2), 659-671. https://doi.org/10.1007/s11764-023-01498-8

@article{e11d1bc2776646b0b2876bc410cb27b2,

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

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.",

keywords = "Paediatric oncology, Long-term follow-up care, Survivorship, Aftercare, Cancer survivors, Passport SurPass, Care plan",

author = "\{de Beijer\}, \{Ismay A. E.\} and Hardijzer, \{Emma C.\} and Riccardo Haupt and Desiree Grabow and Julia Balaguer and Edit Bardi and Nieto, \{Adela Ca{\~n}ete\} and Audronė Ciesiūnienė and Vanessa D{\"u}ster and Anna-Liesa Filbert and Hannah Gsell and Monika Kapitan{\v c}ukė and Ruth Ladenstein and Thorsten Langer and Monica Muraca and \{van den Oever\}, \{Selina R.\} and Sofie Prikken and Jelena Rascon and Tormo, \{Maria Teresa\} and Anne Uyttebroeck and Gertrui Vercruysse and \{van der Pal\}, \{Helena J H\} and Kremer, \{Leontien C. M.\} and G{\"u}nter Schreier and Dieter Hayn and Karl Kreiner and Stefan Beyer and Angelika Rzepka",

note = "{\textcopyright} The Author(s) 2024",

year = "2025",

month = apr,

doi = "10.1007/s11764-023-01498-8",

language = "English",

volume = "19 (2025)",

pages = "659--671",

journal = "Journal of Cancer Survivorship",

issn = "1932-2259",

publisher = "Springer New York",

number = "2",

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de Beijer, IAE, Hardijzer, EC, Haupt, R, Grabow, D, Balaguer, J, Bardi, E, Nieto, AC, Ciesiūnienė, A, Düster, V, Filbert, A-L, Gsell, H, Kapitančukė, M, Ladenstein, R, Langer, T, Muraca, M, van den Oever, SR, Prikken, S, Rascon, J, Tormo, MT, Uyttebroeck, A, Vercruysse, G & van der Pal, HJH & Kremer, LCM 2025, 'Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study', Journal of Cancer Survivorship, vol. 19 (2025), no. 2, pp. 659-671. https://doi.org/10.1007/s11764-023-01498-8

TY - JOUR

T1 - Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study

AU - de Beijer, Ismay A. E.

AU - Hardijzer, Emma C.

AU - Haupt, Riccardo

AU - Grabow, Desiree

AU - Balaguer, Julia

AU - Bardi, Edit

AU - Nieto, Adela Cañete

AU - Ciesiūnienė, Audronė

AU - Düster, Vanessa

AU - Filbert, Anna-Liesa

AU - Gsell, Hannah

AU - Kapitančukė, Monika

AU - Ladenstein, Ruth

AU - Langer, Thorsten

AU - Muraca, Monica

AU - van den Oever, Selina R.

AU - Prikken, Sofie

AU - Rascon, Jelena

AU - Tormo, Maria Teresa

AU - Uyttebroeck, Anne

AU - Vercruysse, Gertrui

AU - van der Pal, Helena J H

AU - Kremer, Leontien C. M.

AU - Schreier, Günter

AU - Hayn, Dieter

AU - Kreiner, Karl

AU - Beyer, Stefan

AU - Rzepka, Angelika

PY - 2025/4

Y1 - 2025/4

N2 - 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.

AB - 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.

KW - Paediatric oncology

KW - Long-term follow-up care

KW - Survivorship

KW - Aftercare

KW - Cancer survivors

KW - Passport SurPass

KW - Care plan

UR - http:///sites/eHealth/Science/Publikationen/2023/2023-xx-xx_Journal_of_Cancer_Survivorship?csf=1&e=7eCUAg

U2 - 10.1007/s11764-023-01498-8

DO - 10.1007/s11764-023-01498-8

M3 - Article

SN - 1932-2259

VL - 19 (2025)

SP - 659

EP - 671

JO - Journal of Cancer Survivorship

JF - Journal of Cancer Survivorship

IS - 2

ER -

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

Abstract

UN SDGs

Research Field

Keywords

Access to Document

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