Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands.
Health Level Seven Europe, Brussels, Belgium.
J Med Internet Res. 2024 May 2;26:e49910. doi: 10.2196/49910.
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.
为了克服知识差距并优化儿童癌症幸存者的长期随访(LTFU)护理,发明了生存护照(SurPass)的概念。在欧洲 PanCareSurPass 项目中,半自动化和互操作的 SurPass(版本 2.0)将在代表 6 个欧洲国家的 6 个 LTFU 护理中心进行优化、实施和评估,以及 3 种不同的卫生系统场景:(1)奥地利和立陶宛的国家电子健康信息系统(EHIS),(2)意大利和西班牙的区域或本地 EHIS,以及(3)比利时和德国的癌症登记处或基于医院的 EHIS。
我们旨在确定并描述与 SurPass(版本 2.0)实施相关的数据输入半自动化、互操作性、数据保护、隐私和网络安全方面的障碍和促进因素。
来自 6 个 LTFU 护理中心的 IT 专家参与了一项半结构化数字调查,重点关注 SurPass(版本 2.0)实施的 IT 相关障碍和促进因素。我们使用适应性可行性模型来评估将 SurPass 集成到现有 EHIS 中的兼容性和可行性。
总共邀请了 20 名 IT 专家中的 13 名(65%)参加。所有 3 个卫生系统场景中与半自动化数据输入和互操作性相关的主要障碍和促进因素包括 EHIS 基础设施不匹配以及使用互操作性框架和国际编码系统。与数据保护或隐私和网络安全相关的主要障碍和促进因素包括个人健康数据的假名化和数据保留。根据适应性可行性模型,第一个卫生系统场景为 SurPass 实施提供了最佳的适应性,其次是第二和第三个场景。
本研究提供了在临床实践中实施 SurPass(版本 2.0)时需要考虑的信息和 IT 相关影响因素的重要见解。我们建议采用健康水平七快速医疗保健互操作性资源和数据安全措施,例如加密、假名化和多因素身份验证,在适用的情况下保护个人健康数据。总之,本研究为将数字健康解决方案集成到现有 EHIS 中提供了实用的见解。