Background Metadata are created to describe the corresponding data in a detailed and unambiguous way and is used for various applications in different research areas, for example, data identification and classification. However, a clear definition of metadata is crucial for further use. Unfortunately, extensive experience with the processing and management of metadata has shown that the term “metadata” and its use is not always unambiguous. Objective This study aimed to understand the definition of metadata and the challenges resulting from metadata reuse. Methods A systematic literature search was performed in this study following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for reporting on systematic reviews. Five research questions were identified to streamline the review process, addressing metadata characteristics, metadata standards, use cases, and problems encountered. This review was preceded by a harmonization process to achieve a general understanding of the terms used. Results The harmonization process resulted in a clear set of definitions for metadata processing focusing on data integration. The following literature review was conducted by 10 reviewers with different backgrounds and using the harmonized definitions. This study included 81 peer-reviewed papers from the last decade after applying various filtering steps to identify the most relevant papers. The 5 research questions could be answered, resulting in a broad overview of the standards, use cases, problems, and corresponding solutions for the application of metadata in different research areas. Conclusions Metadata can be a powerful tool for identifying, describing, and processing information, but its meaningful creation is costly and challenging. This review process uncovered many standards, use cases, problems, and solutions for dealing with metadata. The presented harmonized definitions and the new schema have the potential to improve the classification and generation of metadata by creating a shared understanding of metadata and its context.

Data integration is a necessary and important step to perform translational research and improve the sample size beyond single data collections. For health information, the most recent established communication standards is HL7 FHIR. To bridge the concepts of “minimal invasive” data integration and open standards, we propose a generic ETL framework to process arbitrary patient related data collections into HL7 FHIR – which in turn can then be used for loading into target data warehouses. The proposed algorithm is able to read any relational delimited text exports and produce a standard HL7 FHIR bundle collection. We evaluated an implementation of the algorithm using different lung research registries and used the resulting FHIR resources to fill our i2b2 based data warehouse as well an OMOP common data model repository.

Background In the field of medicine and medical informatics, the importance of comprehensive metadata has long been recognized, and the composition of metadata has become its own field of profession and research. To ensure sustainable and meaningful metadata are maintained, standards and guidelines such as the FAIR (Findability, Accessibility, Interoperability, Reusability) principles have been published. The compilation and maintenance of metadata is performed by field experts supported by metadata management apps. The usability of these apps, for example, in terms of ease of use, efficiency, and error tolerance, crucially determines their benefit to those interested in the data. Objective This study aims to provide a metadata management app with high usability that assists scientists in compiling and using rich metadata. We aim to evaluate our recently developed interactive web app for our collaborative metadata repository (CoMetaR). This study reflects how real users perceive the app by assessing usability scores and explicit usability issues. Methods We evaluated the CoMetaR web app by measuring the usability of 3 modules: core module, provenance module, and data integration module. We defined 10 tasks in which users must acquire information specific to their user role. The participants were asked to complete the tasks in a live web meeting. We used the System Usability Scale questionnaire to measure the usability of the app. For qualitative analysis, we applied a modified think aloud method with the following thematic analysis and categorization into the ISO 9241-110 usability categories. Results A total of 12 individuals participated in the study. We found that over 97% (85/88) of all the tasks were completed successfully. We measured usability scores of 81, 81, and 72 for the 3 evaluated modules. The qualitative analysis resulted in 24 issues with the app. Conclusions A usability score of 81 implies very good usability for the 2 modules, whereas a usability score of 72 still indicates acceptable usability for the third module. We identified 24 issues that serve as starting points for further development. Our method proved to be effective and efficient in terms of effort and outcome. It can be adapted to evaluate apps within the medical informatics field and potentially beyond.

Metadata repositories are an indispensable component of data integration infrastructures and support semantic interoperability between knowledge organization systems. Standards for metadata representation like the ISO/IEC 11179 as well as the Resource Description Framework (RDF) and the Simple Knowledge Organization System (SKOS) by the World Wide Web Consortium were published to ensure metadata interoperability, maintainability and sustainability. The FAIR guidelines were composed to explicate those aspects in four principles divided in fifteen sub-principles. The ISO/IEC 21526 standard extends the 11179 standard for the domain of health care and mandates that SKOS be used for certain scenarios. In medical informatics, the composition of health care SKOS classification schemes is often managed by documentalists and data scientists. They use editors, which support them in producing comprehensive and valid metadata. Current metadata editors either do not properly support the SKOS resource annotations, require server applications or make use of additional databases for metadata storage. These characteristics are contrary to the application independency and versatility of raw Unicode SKOS files, e.g. the custom text arrangement, extensibility or copy & paste editing. We provide an application that adds navigation, auto completion and validity check capabilities on top of a regular Unicode text editor.