An assessment of the European Patient Summary for clinical research: a case study in cardiology

Introduction: The European Health Data Space (EHDS) initiative was launched to create a unified framework for health data exchange across Europe. Central to this initiative is the European Electronic Health Record Exchange Format, designed to achieve interoperability of electronic health record data...

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Detalles Bibliográficos
Autores: Laleci Erturkmen, Gokce Banu, Sinaci, Ali Anil, Tuncay Namli, Boonstra, Machteld J., Lekadir, Karim, 1977-, Gkontra, Polyxeni, Chronaki, Catherine, Facile, Rhonda, Baker, Rebecca, Kush, Rebecca
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2024
País:España
Institución:Universidad de Barcelona
Repositorio:Dipòsit Digital de la UB
OAI Identifier:oai:diposit.ub.edu:2445/227816
Acceso en línea:https://hdl.handle.net/2445/227816
Access Level:acceso abierto
Palabra clave:Indicadors de salut
Estructures de dades (Informàtica)
Dades massives
Health status indicators
Data structures (Computer science)
Big data
Descripción
Sumario:Introduction: The European Health Data Space (EHDS) initiative was launched to create a unified framework for health data exchange across Europe. Central to this initiative is the European Electronic Health Record Exchange Format, designed to achieve interoperability of electronic health record data across Europe. Despite these advancements, the readiness of current guidelines and implementations, such as the European Patient Summary, to support secondary use in clinical research, particularly in cardiology, remains underexplored. Methods: This study aims to evaluate the European Patient Summary guidelines and their implementations, specifically the HL7 FHIR International Patient Summary Implementation Guide, to determine their suitability for secondary use in clinical research. The focus is on identifying gaps and extensions needed to enhance the utility of the European Patient Summary for building artificial intelligence models in assisting heart failure management. Results: We selected two European Union-funded research projects, DataTools4Heart and AI4HF, that aim to reuse electronic health record data to develop artificial intelligence models for personalized decision support services for heart failure patients. We analyzed their clinical use cases and the specific data items required, and we compared these with the current European Patient Summary guidelines and provided a detailed gap analysis indicating similarities and required extensions. In our gap analysis, we also compared the needs of DataTools4Heart and AI4HF with the HL7 FHIR International Patient Summary Implementation Guide to assess the extensions needed to support clinical research. Discussion: The EHDS is a transformative initiative to establish a European health data ecosystem that supports healthcare delivery and clinical research. Our comparative analysis demonstrates that, with minor extensions, these guidelines have significant potential to facilitate access to electronic healthcare record data for the secondary use, particularly in training AI models. We advocate for the adoption of an International Patient Summary format as a semantically interoperable core set of data elements, which will enhance global clinical research efforts and improve patient outcomes through precision medicine.