Ismay A E de Beijer, Emma C Hardijzer, Riccardo Haupt, Desiree Grabow, Julia Balaguer, Edit Bardi, Adela Cañete Nieto, Audronė Ciesiūniene, Vanessa Düster, Anna-Liesa Filbert, Hannah Gsell, Monika Kapitančukė, Ruth Ladenstein, Thorsten Langer, Monica Muraca, Selina R van den Oever, Sofie Prikken, Jelena Rascon, Maria Teresa Tormo, Anne Uyttebroeck, Gertrui Vercruysse, Helena J H van der Pal, Leontien C M Kremer, Saskia M F Pluijm
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Topics related to Care, Ethical, Legal, Social, Economic, and Information & IT-related aspects of implementing SurPass were evaluated.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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. 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引用次数: 0
摘要
目的:确定在欧洲六个长期随访(LTFU)护理中心实施幸存者护照(exceed) v2.0的障碍和促进因素。方法:包括儿童癌症幸存者(CCSs)、医疗保健提供者(HCPs)、管理人员、信息技术(IT)专家等在内的利益相关者参加了六次在线开放空间会议。对实施“超越”的关怀、道德、法律、社会、经济和信息与it相关方面的主题进行了评估。结果:本研究确定了115个障碍和159个促进因素。主要障碍包括在中心和网络合作中缺乏标准化的LTFU护理,超越的可及性的不确定性,以及如何将超越整合到电子卫生信息系统中的不确定性。主要的促进因素包括中心的标准化和协调LTFU护理,允许CCSs在exceed中隐藏敏感信息和(半)自动数据传输和归档。结论:在护理、伦理考虑和信息技术领域确定了实施“超越”的主要障碍。为了解决这些障碍并促进在“超越”上的实施,我们制定了27条建议。主要建议包括使用国际开发的协议和指南来实施LTFU护理,根据CCSs明确决定哪些方可以访问超越数据,以及使用Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR)促进(半)自动化数据传输和归档。对癌症幸存者的启示:本研究的发现可以帮助实施exceed,并确保癌症幸存者获得高质量的LTFU护理,并获得必要的信息来有效地管理他们的健康。
Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study.
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.
期刊介绍:
Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.