IT-Related Barriers and Facilitators to the Implementation of a New European eHealth Solution, the Digital Survivorship Passport (SurPass Version 2.0): Semistructured Digital Survey.

SurPass, eHealth Survivorship Passport cancer survivors information and technology long-term follow up care pediatric oncology survivorship

Journal

Journal of medical Internet research
ISSN: 1438-8871
Titre abrégé: J Med Internet Res
Pays: Canada
ID NLM: 100959882

Informations de publication

Date de publication:
02 May 2024
Historique:
received: 13 06 2023
accepted: 28 02 2024
revised: 24 10 2023
medline: 2 5 2024
pubmed: 2 5 2024
entrez: 2 5 2024
Statut: epublish

Résumé

To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of the Survivorship Passport (SurPass) has been invented. Within the European PanCareSurPass project, the semiautomated and interoperable SurPass (version 2.0) will be optimized, implemented, and evaluated at 6 LTFU care centers representing 6 European countries and 3 distinct health system scenarios: (1) national electronic health information systems (EHISs) in Austria and Lithuania, (2) regional or local EHISs in Italy and Spain, and (3) cancer registries or hospital-based EHISs in Belgium and Germany. We aimed to identify and describe barriers and facilitators for SurPass (version 2.0) implementation concerning semiautomation of data input, interoperability, data protection, privacy, and cybersecurity. IT specialists from the 6 LTFU care centers participated in a semistructured digital survey focusing on IT-related barriers and facilitators to SurPass (version 2.0) implementation. We used the fit-viability model to assess the compatibility and feasibility of integrating SurPass into existing EHISs. In total, 13/20 (65%) invited IT specialists participated. The main barriers and facilitators in all 3 health system scenarios related to semiautomated data input and interoperability included unaligned EHIS infrastructure and the use of interoperability frameworks and international coding systems. The main barriers and facilitators related to data protection or privacy and cybersecurity included pseudonymization of personal health data and data retention. According to the fit-viability model, the first health system scenario provides the best fit for SurPass implementation, followed by the second and third scenarios. This study provides essential insights into the information and IT-related influencing factors that need to be considered when implementing the SurPass (version 2.0) in clinical practice. We recommend the adoption of Health Level Seven Fast Healthcare Interoperability Resources and data security measures such as encryption, pseudonymization, and multifactor authentication to protect personal health data where applicable. In sum, this study offers practical insights into integrating digital health solutions into existing EHISs.

Sections du résumé

BACKGROUND BACKGROUND
To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of the Survivorship Passport (SurPass) has been invented. Within the European PanCareSurPass project, the semiautomated and interoperable SurPass (version 2.0) will be optimized, implemented, and evaluated at 6 LTFU care centers representing 6 European countries and 3 distinct health system scenarios: (1) national electronic health information systems (EHISs) in Austria and Lithuania, (2) regional or local EHISs in Italy and Spain, and (3) cancer registries or hospital-based EHISs in Belgium and Germany.
OBJECTIVE OBJECTIVE
We aimed to identify and describe barriers and facilitators for SurPass (version 2.0) implementation concerning semiautomation of data input, interoperability, data protection, privacy, and cybersecurity.
METHODS METHODS
IT specialists from the 6 LTFU care centers participated in a semistructured digital survey focusing on IT-related barriers and facilitators to SurPass (version 2.0) implementation. We used the fit-viability model to assess the compatibility and feasibility of integrating SurPass into existing EHISs.
RESULTS RESULTS
In total, 13/20 (65%) invited IT specialists participated. The main barriers and facilitators in all 3 health system scenarios related to semiautomated data input and interoperability included unaligned EHIS infrastructure and the use of interoperability frameworks and international coding systems. The main barriers and facilitators related to data protection or privacy and cybersecurity included pseudonymization of personal health data and data retention. According to the fit-viability model, the first health system scenario provides the best fit for SurPass implementation, followed by the second and third scenarios.
CONCLUSIONS CONCLUSIONS
This study provides essential insights into the information and IT-related influencing factors that need to be considered when implementing the SurPass (version 2.0) in clinical practice. We recommend the adoption of Health Level Seven Fast Healthcare Interoperability Resources and data security measures such as encryption, pseudonymization, and multifactor authentication to protect personal health data where applicable. In sum, this study offers practical insights into integrating digital health solutions into existing EHISs.

Identifiants

pubmed: 38696248
pii: v26i1e49910
doi: 10.2196/49910
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e49910

Informations de copyright

©Ismay A E de Beijer, Selina R van den Oever, Eliana Charalambous, Giorgio Cangioli, Julia Balaguer, Edit Bardi, Marie Alfes, Adela Cañete Nieto, Marisa Correcher, Tiago Pinto da Costa, Alexander Degelsegger-Márquez, Vanessa Düster, Anna-Liesa Filbert, Desiree Grabow, Gerald Gredinger, Hannah Gsell, Riccardo Haupt, Maria van Helvoirt, Ruth Ladenstein, Thorsten Langer, Anja Laschkolnig, Monica Muraca, Saskia M F Pluijm, Jelena Rascon, Günter Schreier, Zuzana Tomášikova, Florian Trauner, Justas Trinkūnas, Kathrin Trunner, Anne Uyttebroeck, Leontien C M Kremer, Helena J H van der Pal, Catherine Chronaki, PanCareSurPass Consortium. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 02.05.2024.

Auteurs

Ismay A E de Beijer (IAE)

Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands.

Selina R van den Oever (SR)

Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands.

Eliana Charalambous (E)

Health Level Seven Europe, Brussels, Belgium.
Venizeleio General Hospital of Heraklion, Heraklion, Greece.

Giorgio Cangioli (G)

Health Level Seven Europe, Brussels, Belgium.

Julia Balaguer (J)

Hospital Universitario y Politécnico La Fe, Valencia, Spain.

Edit Bardi (E)

St Anna Children's Hospital, Vienna, Austria.
Department of Paediatrics and Adolescent Medicine, Kepler University Hospital, Johannes Kepler University Linz, Linz, Austria.

Marie Alfes (M)

Childhood Cancer International Europe, Vienna, Austria.

Adela Cañete Nieto (A)

Hospital Universitario y Politécnico La Fe, Valencia, Spain.

Marisa Correcher (M)

Instituto Investigación Sanitaria La Fe, Valencia, Spain.

Tiago Pinto da Costa (T)

Childhood Cancer International Europe, Vienna, Austria.

Alexander Degelsegger-Márquez (A)

Gesundheit Österreich GmbH, Vienna, Austria.

Vanessa Düster (V)

Department of Studies and Statistics for Integrated Research and Projects, St Anna Children's Cancer Research Institute, Vienna, Austria.

Anna-Liesa Filbert (AL)

Division of Childhood Cancer Epidemiology, German Childhood Cancer Registry, Institute of Medical Biostatistics, Epidemiology and Informatics, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany.

Desiree Grabow (D)

Division of Childhood Cancer Epidemiology, German Childhood Cancer Registry, Institute of Medical Biostatistics, Epidemiology and Informatics, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany.

Gerald Gredinger (G)

Gesundheit Österreich GmbH, Vienna, Austria.

Hannah Gsell (H)

Childhood Cancer International Europe, Vienna, Austria.

Riccardo Haupt (R)

Diagnosi, Osservazione, Prevenzione dopo trattamento Oncologico Clinic, Department of Hematology/Oncology, Istituto di Ricovero e Cura a Carattere Scientifico Istituto Giannina Gaslini, Genova, Italy.

Maria van Helvoirt (M)

University Hospitals Leuven, Katholieke Universiteit Leuven, Leuven, Belgium.

Ruth Ladenstein (R)

St Anna Children's Hospital, Vienna, Austria.
Department of Studies and Statistics for Integrated Research and Projects, St Anna Children's Cancer Research Institute, Vienna, Austria.
Department of Paediatrics, Medical University of Vienna, Vienna, Austria.

Thorsten Langer (T)

Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Lübeck, Germany.

Anja Laschkolnig (A)

Gesundheit Österreich GmbH, Vienna, Austria.

Monica Muraca (M)

Diagnosi, Osservazione, Prevenzione dopo trattamento Oncologico Clinic, Department of Hematology/Oncology, Istituto di Ricovero e Cura a Carattere Scientifico Istituto Giannina Gaslini, Genova, Italy.

Saskia M F Pluijm (SMF)

Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands.

Jelena Rascon (J)

Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania.
Clinics for Children's Diseases, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.

Günter Schreier (G)

Center for Health and Bioresources, Austrian Institute of Technology, Graz, Austria.

Zuzana Tomášikova (Z)

Childhood Cancer International Europe, Vienna, Austria.

Florian Trauner (F)

Gesundheit Österreich GmbH, Vienna, Austria.

Justas Trinkūnas (J)

Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania.

Kathrin Trunner (K)

Gesundheit Österreich GmbH, Vienna, Austria.

Anne Uyttebroeck (A)

University Hospitals Leuven, Katholieke Universiteit Leuven, Leuven, Belgium.

Leontien C M Kremer (LCM)

Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands.
Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, Netherlands.
Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, Netherlands.

Helena J H van der Pal (HJH)

Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands.

Catherine Chronaki (C)

Health Level Seven Europe, Brussels, Belgium.
See Acknowledgments, .

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