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Pragmatic MDR: a metadata repository with bottom-up standardization of medical metadata through reuse.
Hegselmann, Stefan; Storck, Michael; Gessner, Sophia; Neuhaus, Philipp; Varghese, Julian; Bruland, Philipp; Meidt, Alexandra; Mertens, Cornelia; Riepenhausen, Sarah; Baier, Sonja; Stöcker, Benedikt; Henke, Jörg; Schmidt, Carsten Oliver; Dugas, Martin.
Afiliación
  • Hegselmann S; Institute of Medical Informatics, University of Münster, Münster, Germany. stefan.hegselmann@uni-muenster.de.
  • Storck M; Institute of Medical Informatics, University of Münster, Münster, Germany.
  • Gessner S; Institute of Medical Informatics, University of Münster, Münster, Germany.
  • Neuhaus P; Institute of Medical Informatics, University of Münster, Münster, Germany.
  • Varghese J; Institute of Medical Informatics, University of Münster, Münster, Germany.
  • Bruland P; University of Applied Sciences Ostwestfalen-Lippe, Lemgo, Germany.
  • Meidt A; Institute of Medical Informatics, University of Münster, Münster, Germany.
  • Mertens C; Institute of Medical Informatics, University of Münster, Münster, Germany.
  • Riepenhausen S; Institute of Medical Informatics, University of Münster, Münster, Germany.
  • Baier S; Centre for Clinical Trials, University of Münster, Münster, Germany.
  • Stöcker B; Centre for Clinical Trials, University of Münster, Münster, Germany.
  • Henke J; Institute of Community Medicine, University Medicine of Greifswald, Greifswald, Germany.
  • Schmidt CO; Institute of Community Medicine, University Medicine of Greifswald, Greifswald, Germany.
  • Dugas M; Institute of Medical Informatics, University of Münster, Münster, Germany.
BMC Med Inform Decis Mak ; 21(1): 160, 2021 05 17.
Article en En | MEDLINE | ID: mdl-34001121
BACKGROUND: The variety of medical documentation often leads to incompatible data elements that impede data integration between institutions. A common approach to standardize and distribute metadata definitions are ISO/IEC 11179 norm-compliant metadata repositories with top-down standardization. To the best of our knowledge, however, it is not yet common practice to reuse the content of publicly accessible metadata repositories for creation of case report forms or routine documentation. We suggest an alternative concept called pragmatic metadata repository, which enables a community-driven bottom-up approach for agreeing on data collection models. A pragmatic metadata repository collects real-world documentation and considers frequent metadata definitions as high quality with potential for reuse. METHODS: We implemented a pragmatic metadata repository proof of concept application and filled it with medical forms from the Portal of Medical Data Models. We applied this prototype in two use cases to demonstrate its capabilities for reusing metadata: first, integration into a study editor for the suggestion of data elements and, second, metadata synchronization between two institutions. Moreover, we evaluated the emergence of bottom-up standards in the prototype and two medical data managers assessed their quality for 24 medical concepts. RESULTS: The resulting prototype contained 466,569 unique metadata definitions. Integration into the study editor led to a reuse of 1836 items and item groups. During the metadata synchronization, semantic codes of 4608 data elements were transferred. Our evaluation revealed that for less complex medical concepts weak bottom-up standards could be established. However, more diverse disease-related concepts showed no convergence of data elements due to an enormous heterogeneity of metadata. The survey showed fair agreement (Kalpha = 0.50, 95% CI 0.43-0.56) for good item quality of bottom-up standards. CONCLUSIONS: We demonstrated the feasibility of the pragmatic metadata repository concept for medical documentation. Applications of the prototype in two use cases suggest that it facilitates the reuse of data elements. Our evaluation showed that bottom-up standardization based on a large collection of real-world metadata can yield useful results. The proposed concept shall not replace existing top-down approaches, rather it complements them by showing what is commonly used in the community to guide other researchers.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Documentación / Metadatos Tipo de estudio: Guideline / Qualitative_research Límite: Humans Idioma: En Revista: BMC Med Inform Decis Mak Asunto de la revista: INFORMATICA MEDICA Año: 2021 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Reino Unido

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Documentación / Metadatos Tipo de estudio: Guideline / Qualitative_research Límite: Humans Idioma: En Revista: BMC Med Inform Decis Mak Asunto de la revista: INFORMATICA MEDICA Año: 2021 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Reino Unido