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: Long-term follow-up care; Open Space Technology; Paediatric oncology; SurPass; Survivorship Passport; Survivorship care; eHealth.
© 2024. The Author(s).