Development and Implementation of an Open, Modular, and Participatory Toolchain for Distributed IT Development in Healthcare Research - Lessons Learned...70th Annual Meeting of the German Association of Medical Informatics, Biometry, and Epidemiology e.V. (GMDS), September 7-11, 2025, Jena, Germany.
Introduction: Distributed healthcare research infrastructures face significant challenges when translating routine clinical data into harmonized, research-ready formats using HL7 FHIR standards. State of the Art: Existing FHIR-based pipelines such as the SMART/HL7 FHIR Bulk Data Access API, FHIR-to-...
| Publicado en: | Studies in Health Technology & Informatics Vol. 331; pp. 378 - 386 |
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| Autores principales: | , , , , , , , , , , |
| Formato: | proceedings research Journal Article |
| Publicado: |
Sage Publications Inc.
2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=188120345&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 188120345 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09269630 U1V jtl: Studies in Health Technology & Informatics issn: 09269630 maglogo: N pubinfo: dt: 2025 vid: 331 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 188120345 188120345 188120345 10.3233/SHTI251418 188120345 ppf: 378 ppct: 8 formats: tig: atl: Development and Implementation of an Open, Modular, and Participatory Toolchain for Distributed IT Development in Healthcare Research - Lessons Learned...70th Annual Meeting of the German Association of Medical Informatics, Biometry, and Epidemiology e.V. (GMDS), September 7-11, 2025, Jena, Germany. aug: au: NEUMANN, Daniel GEBLER, Richard KIEDERLE, Jana BECK, Jördis AUBELE, Fabio STRUEBING, Alexander SCHMIDT, Florian REUSCHE, Matthias KOESTER, Helene LOEFFLER, Markus STAEUBERT, Sebastian affil: Institute for Medical Informatics, Statistics and Epidemiology (IMISE), University Leipzig, Germany. sug: subj: Systems Development Systems Implementation Information Technology Health Services Research Academic Medical Centers Clinical Information Systems Human Congresses and Conferences Germany Germany Medical Informatics Data Analytics Electronic Data Interchange Implementation Science Systems Integration Data Management Conceptual Framework Access to Information Collaboration Databases, Health Funding Source ab: Introduction: Distributed healthcare research infrastructures face significant challenges when translating routine clinical data into harmonized, research-ready formats using HL7 FHIR standards. State of the Art: Existing FHIR-based pipelines such as the SMART/HL7 FHIR Bulk Data Access API, FHIR-to-OMOP mappings, and analytical services like Pathling demonstrate technical feasibility. However, most assume semantically valid FHIR data, operate within single-institution settings, and lack practical guidance for deployment across heterogeneous, regulated environments. Technical Framework and Deployment: Within the German Medical Informatics Initiative (MII) and the INTERPOLAR project, we developed an open, modular, and participatory toolchain for decentralized FHIR-based data transformation and export across multiple Data Integration Centers (DICs). The toolchain supports FHIR extraction, profile-based transformation, REDCap integration, and OMOP-compatible export. Deployment required adapting to local infrastructures, regulatory boundaries (e.g., de-identified FHIR stores, restricted network access), and clinical domain needs. Configurable modules, proxy support, and site-specific adaptations were essential for integration into operational hospital workflows. Lessons Learned: Key lessons include the necessity of early access to real data, the limitations of synthetic test data, the value of joint workshops for profile interpretation, and the need for adaptable validation tooling. Organizational knowledge gaps, inconsistent FHIR implementations, and performance issues in resource flattening were addressed through co-design and iterative rollout strategies. Validator modules are essential across technical, content, and cross-site consistency levels. Conclusion: Centralized development paired with decentralized, participatory deployment enables scalable, GDPR-compliant infrastructures for embedded clinical research. This approach offers a replicable framework for future multi-site initiatives aiming to leverage real-world data across diverse environments. pubtype: Academic Journal doctype: proceedings research Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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