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Innovation in cancer therapy has increased childhood cancer survival rates. However, survivors are still at risk of developing late effects. In the digital transformation of the health sector, the Survivorship Passport (SurPass) can support long-term follow-up care plans. Gaps in seamless connectivity among hospital departments, primary care, combined with the time of health professionals required to collect and fill-in health data in SurPass, are barriers to its adoption in daily clinical practice. The PanCareSurPass (PCSP) project was motivated to address these gaps by a new version of SurPass (v2.0) that supports semi-automatic assembly from organizational Electronic Health Record (EHR) systems of the treatment summary data using HL7 FHIR, to create SurPass, and to link it to regional or national digital health infrastructures in six European countries. In this paper we present the methodology used to develop the SurPass technical implementation strategy with special focus on the European Health Data Space (EHDS). The recently provisionally approved EHDS regulation instruments a digital health data ecosystem with opportunities for cost-effective SurPass implementation across Europe. Moving forward, a European HL7 FHIR SurPass Implementation Guide along with synthetic data sets, and validation tools can enrich the European Electronic Health Record Exchange Format (EEHRxF) with use cases on health & wellness of childhood cancer survivors. [ABSTRACT FROM AUTHOR]

The Survivorship Passport (SurPass) for childhood cancer survivors provides a personalized treatment summary together with a care plan for long-term screening of possible late effects. HL7 FHIR connectivity of Electronic Health Record (EHR) systems with the SurPass has been proposed to reduce the burden of collecting and organizing the relevant information. We present the results of testing and validation efforts conducted across six clinics in Austria, Belgium, Germany, Italy, Lithuania, and Spain. We also discuss ways in which this experience can be used to reduce efforts for the SurPass integration in other clinics across Europe. [ABSTRACT FROM AUTHOR]

Telemedicine can provide benefits in patient affected by chronic diseases or elderly citizens as part of standard routine care supported by digital health. The GATEKEEPER (GK) Project was financed to create a vendor independent platform to be adopted in medical practice and to demonstrate its effect, benefit value, and scalability in 8 connected medical use cases with some independent pilots. This paper, after a description of the GK platform architecture, is focused on the creation of a FHIR (Fast Healthcare Interoperability Resource) IG (Implementation Guide) and its adoption in specific use cases. The final aim is to combine conventional data, collected in the hospital, with unconventional data, coming from wearable devices, to exploit artificial intelligence (AI) models designed to evaluate the effectiveness of a new parsimonious risk prediction model for Type 2 diabetes (T2D). [ABSTRACT FROM AUTHOR]

The GATEKEEPER (GK) Project was financed by the European Commission to develop a platform and marketplace to share and match ideas, technologies, user needs and processes to ensure a healthier independent life for the aging population connecting all the actors involved in the care circle. In this paper, the GK platform architecture is presented focusing on the role of HL7 FHIR to provide a shared logical data model to be explored in heterogeneous daily living environments. GK pilots are used to illustrate the impact of the approach, benefit value, and scalability, suggesting ways to further accelerate progress. [ABSTRACT FROM AUTHOR]

The International Patient Summary Standard (EN 17269) normalizes the dataset within the European Guideline on cross-border exchange of a patient summary. This dataset has been widely appreciated and been taken as the basis for projects in both Europe and wider afield, e.g. U.S.A, Canada and more. The dataset is a relatively mature dataset and it is currently in its third iteration (i.e., 2013, 2016, 2020). Even so, to move from a policy-driven guideline to a formal standard was not straight forward. The paper describes how the 'minimal and non-exhaustive' dataset could be the basis for a reference standard; one that was intended to facilitate both an 'implementable' and 'sustainable' solution. In particular, the requirement of 'extensibility' for the standard dataset had to be addressed. [ABSTRACT FROM AUTHOR]

The European Project GATEKEEPER aims to develop a platform and marketplace to ensure a healthier independent life for the aging population. In this platform the role of HL7 FHIR is to provide a shared logical data model to collect data in heterogeneous living, which can be used by AI Service and the Gatekeeper HL7 FHIR Implementation Guide was created for this purpose. Independent pilots used this IG and illustrate the impact of the approach, benefit, value, and scalability. [ABSTRACT FROM AUTHOR]

This paper provides a summary of the Privacy Management Analysis method followed for the analysis of the International Patient Summary exchange use cases of Trillium II Project. The objective is to recommend the required security and privacy measures by providing traceability from Regulations/Principles/Preferences to the recommended Security & Privacy Measures that needs to be implemented in pilots. [ABSTRACT FROM AUTHOR]

The International Patient Summary (IPS) standards aim to define the specifications for a minimal and non-exhaustive Patient Summary, which is specialty-agnostic and condition-independent, but still clinically relevant. Meanwhile, health systems are developing and implementing their own variation of a patient summary while, the eHealth Digital Services Infrastructure (eHDSI) initiative is deploying patient summary services across countries in the Europe. In the spirit of co-creation, flexible governance, and continuous alignment advocated by eStandards, the Trillum-II initiative promotes adoption of the patient summary by engaging standards organizations, and interoperability practitioners in a community of practice for digital health to share best practices, tools, data, specifications, and experiences. This paper compares operational aspects of patient summaries in 14 case studies in Europe, the United States, and across the world, focusing on how patient summary components are used in practice, to promote alignment and joint understanding that will improve quality of standards and lower costs of interoperability. [ABSTRACT FROM AUTHOR]

In an increasingly mobile world, many citizens and professionals are frequent travellers. Access during unplanned care to their patient summary, their most essential health information in a form physicians in another country can understand can impact not only their safety, but also the quality and effectiveness of care. International health information technology (HIT) standards such as HL7 CDA have been developed to advance interoperability. Implementation guides (IG) and IHE profiles constrain standards and make them fit for the purpose of specific use cases. A joint effort between HL7, IHE, and HealthStory created Consolidated CDA (C-CDA), a set of harmonized CDA IGs for the US that is cited in the Meaning Use II (MU-II) regulation. In the EU, the Patient Summary (PS) Guideline recently adopted, cites the epSOS IG also based on HL7 CDA, to support cross-border care in the EU and inform national eHealth programs. Trillium Bridge project supports international standards development by extending the EU PS Guideline and MU-II in the transatlantic setting. This paper presents preliminary findings from comparing patient summaries in the EU and US and reflects on the challenge of implementing interoperable eHealth systems in the cross-border or transatlantic setting. [ABSTRACT FROM AUTHOR]

Background: 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., Objective: 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., Methods: 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., Results: 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., Conclusions: 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., (©Ismay A E de Beijer, Selina R van den Oever, Eliana Charalambous, Giorgio Cangioli, Julia Balaguer, Edit Bardi, Marie Alfes, Adela Cañete Nieto, Marisa Correcher, Tiago Pinto da Costa, Alexander Degelsegger-Márquez, Vanessa Düster, Anna-Liesa Filbert, Desiree Grabow, Gerald Gredinger, Hannah Gsell, Riccardo Haupt, Maria van Helvoirt, Ruth Ladenstein, Thorsten Langer, Anja Laschkolnig, Monica Muraca, Saskia M F Pluijm, Jelena Rascon, Günter Schreier, Zuzana Tomášikova, Florian Trauner, Justas Trinkūnas, Kathrin Trunner, Anne Uyttebroeck, Leontien C M Kremer, Helena J H van der Pal, Catherine Chronaki, PanCareSurPass Consortium. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 02.05.2024.)

The European Project GATEKEEPER aims to develop a platform and marketplace to ensure a healthier independent life for the aging population. In this platform the role of HL7 FHIR is to provide a shared logical data model to collect data in heterogeneous living, which can be used by AI Service and the Gatekeeper HL7 FHIR Implementation Guide was created for this purpose. Independent pilots used this IG and illustrate the impact of the approach, benefit, value, and scalability.

The Medical Product Information found in most medication boxes offer a wealth of information, including terms of active ingredients, excipients, indications, dosage, route of administration, risks, and safety information. Digital health services that help patients, their care givers, and health professionals to manage medication, can be improved with tailored information based on user profile, the patient's Electronic Health Record (EHR) summary, and Medicinal Product Information. The electronic Product information (ePI) comprises the summary of product characteristics, package leaflet, and product label. The European Medicines Agency released in 2021 the first version of the EU proof-of-concept ePI standard based on HL7 FHIR. The Gravitate-Health project uses this common standard as a springboard to implement a federated open-source platform and services that helps advance access, understanding, and adherence by providing trusted medicinal information in an interoperable and scalable way. In this paper, we present the agile technical approach and co-creation process to design, test, and progressively mature interoperability working with the HL7 Vulcan Accelerator and FHIR connectathons.

Compared to the general population, childhood cancer survivors represent a vulnerable population as they are at increased risk of developing health problems, known as late effects, resulting in excess morbidity and mortality. The Survivorship Passport aims to capture key health data about the survivors and their treatment, as well as personalized recommendations and a care plan with the aim to support long-term survivorship care. The PanCareSurPass (PCSP) project building on the experience gained in an earlier implementation in Giannina Gaslini Institute, Italy, will implement and rigorously assess an integrated, HL7 FHIR based, implementation of the Survivorship Passport. The six implementation countries, namely Austria, Belgium, Germany, Italy, Lithuania, and Spain, are supported by different national or regional digital health infrastructures and Electronic Medical Record (EMR) systems. Semi structured interviews were carried out to explore potential factors affecting implementation, identify use cases, and coded data that can be semi-automatically transferred from the EMR to SurPass. This paper reflects on findings of these interviews and confirms the need for a multidisciplinary and multi-professional approach towards a sustainable and integrated large-scale implementation of the Survivorship Passport across Europe.

In an increasingly mobile world, many citizens and professionals are frequent travellers. Access during unplanned care to their patient summary, their most essential health information in a form physicians in another country can understand can impact not only their safety, but also the quality and effectiveness of care. International health information technology (HIT) standards such as HL7 CDA have been developed to advance interoperability. Implementation guides (IG) and IHE profiles constrain standards and make them fit for the purpose of specific use cases. A joint effort between HL7, IHE, and HealthStory created Consolidated CDA (C-CDA), a set of harmonized CDA IGs for the US that is cited in the Meaning Use II (MU-II) regulation. In the EU, the Patient Summary (PS) Guideline recently adopted, cites the epSOS IG also based on HL7 CDA, to support cross-border care in the EU and inform national eHealth programs. Trillium Bridge project supports international standards development by extending the EU PS Guideline and MU-II in the transatlantic setting. This paper presents preliminary findings from comparing patient summaries in the EU and US and reflects on the challenge of implementing interoperable eHealth systems in the cross-border or transatlantic setting.