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

Autor: de Beijer IAE; Princess Máxima Center for Pediatric Oncology, Heidelberglaan 25, 3584 CS, Utrecht, The Netherlands. i.a.e.debeijer-3@prinsesmaximacentrum.nl., Hardijzer EC; Princess Máxima Center for Pediatric Oncology, Heidelberglaan 25, 3584 CS, Utrecht, The Netherlands., Haupt R; IRCCS Istituto Giannina Gaslini, Genoa, Italy., Grabow D; 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, Mainz, Germany., Balaguer J; Hospital Universitario y Politécnico La Fe, Valencia, Spain., Bardi E; St. Anna Children's Hospital, Vienna, Austria.; Department of Paediatrics and Adolescent Medicine, Johannes Kepler University Linz, Kepler University Hospital, Linz, Austria., Cañete Nieto A; Hospital Universitario y Politécnico La Fe, Valencia, Spain., Ciesiūniene A; Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania., Düster V; 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, Vienna, Austria., Filbert AL; 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, Mainz, Germany., Gsell H; CCI Europe, Vienna, Austria., Kapitančukė M; Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania., Ladenstein R; 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, Vienna, Austria., Langer T; Universitatsklinikum Schleswig-Holstein, Campus Lubeck, Lübeck, Germany., Muraca M; IRCCS Istituto Giannina Gaslini, Genoa, Italy., van den Oever SR; Princess Máxima Center for Pediatric Oncology, Heidelberglaan 25, 3584 CS, Utrecht, The Netherlands., Prikken S; University Hospitals Leuven, KU Leuven, Louvain, Belgium., Rascon J; Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania., Tormo MT; Instituto de Investigación Sanitaria La Fe, Valencia, Spain., Uyttebroeck A; University Hospitals Leuven, KU Leuven, Louvain, Belgium., Vercruysse G; University Hospitals Leuven, KU Leuven, Louvain, Belgium., van der Pal HJH; Princess Máxima Center for Pediatric Oncology, Heidelberglaan 25, 3584 CS, Utrecht, The Netherlands., Kremer LCM; Princess Máxima Center for Pediatric Oncology, Heidelberglaan 25, 3584 CS, Utrecht, The Netherlands.; University Medical Center Utrecht, Wilhelmina Children's Hospital, Utrecht, the Netherlands.; Department of Pediatrics, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands., Pluijm SMF; Princess Máxima Center for Pediatric Oncology, Heidelberglaan 25, 3584 CS, Utrecht, The Netherlands.
Jazyk: angličtina
Zdroj: Journal of cancer survivorship : research and practice [J Cancer Surviv] 2023 Nov 28. Date of Electronic Publication: 2023 Nov 28.
DOI: 10.1007/s11764-023-01498-8
Abstrakt: 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.
(© 2024. The Author(s).)
Databáze: MEDLINE
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