TY - JOUR
T1 - Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0)
T2 - 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 - Cañete Nieto, Adela
AU - Ciesiūniene, 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 - Pluijm, Saskia M. F.
N1 - Funding Information: This work was supported by the European Union’s Horizon 2020 research and innovation programme (grant number: 899999). The funding source was not involved in study design, data collection, data analysis and interpretation, writing of the manuscript, and the decision to submit this article for publication. Publisher Copyright: © 2023, The Author(s).
PY - 2023
Y1 - 2023
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 - Long-term follow-up care
KW - Open Space Technology
KW - Paediatric oncology
KW - SurPass
KW - Survivorship Passport
KW - Survivorship care
KW - eHealth
UR - http://www.scopus.com/inward/record.url?scp=85177792208&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s11764-023-01498-8
DO - https://doi.org/10.1007/s11764-023-01498-8
M3 - Article
C2 - 38015382
SN - 1932-2259
JO - Journal of Cancer Survivorship
JF - Journal of Cancer Survivorship
ER -