{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T13:25:14Z","timestamp":1789046714876,"version":"build-2803163510"},"reference-count":66,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Med Inform"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec sec-type=\"background\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>The Swiss Personalized Health Network (SPHN) facilitates the interoperability and secure sharing of health-related data for research in Switzerland, in line with the findable, accessible, interoperable, and reusable (FAIR) principles. Since medical datasets can be highly sensitive, access is often governed by complex legal and regulatory requirements. Enabling researchers to discover, understand, and evaluate datasets through rich, well-structured metadata is therefore essential to support informed decisions about data suitability and reuse.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec sec-type=\"objective\">\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>This study describes the design and functionality of the SPHN Metadata Catalog and its role in supporting the discovery, exploration, and reuse assessment of health-related datasets.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec sec-type=\"methods\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>The SPHN Metadata Catalog is a FAIR Data Point\u2013compliant infrastructure that provides rich, structured metadata in both human and machine-readable form. Dataset descriptions are based on the HealthDCAT (Health Data Catalog Vocabulary) Application Profile, ensuring a standardized representation of health data catalogs. Beyond the descriptive metadata typically offered by other catalogs, the SPHN Metadata Catalog includes extensive dataset-level statistics expressed using the Vocabulary of Interlinked Datasets. An interactive visualization component further enables users to explore graph-based schemas and datasets, including entities, attributes, relationships, and their relative abundances.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec sec-type=\"results\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The SPHN Metadata Catalog enables users to explore the semantic structure of graph schemas and statistics of datasets prior to requesting access. Researchers can examine data structures, relationships, attributes, and the abundances of individual data elements. This functionality supports feasibility assessments and informed evaluations of dataset suitability and reuse conditions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec sec-type=\"conclusions\">\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>By combining HealthDCAT Application Profile\u2013based descriptions with rich statistical metadata and interactive exploration capabilities, the SPHN Metadata Catalog enhances dataset discoverability and supports FAIR-compliant data reuse. As a key component of Switzerland\u2019s health data research infrastructure, the SPHN Metadata Catalog provides a foundation for future interoperability initiatives, including potential alignment with emerging frameworks such as the European Health Data Space.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.2196\/90146","type":"journal-article","created":{"date-parts":[[2026,7,14]],"date-time":"2026-07-14T20:41:21Z","timestamp":1784061681000},"page":"e90146-e90146","source":"Crossref","is-referenced-by-count":1,"title":["The Swiss Personalized Health Network Metadata Catalog: Platform for Health Data Discovery and Exploration Based on Findable, Accessible, Interoperable, and Reusable Principles"],"prefix":"10.2196","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4421-3580","authenticated-orcid":false,"given":"Harald","family":"Witte","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3583-7340","authenticated-orcid":false,"given":"Deepak Raveendran","family":"Unni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-8850-0532","authenticated-orcid":false,"given":"Philip","family":"Krauss","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4639-4431","authenticated-orcid":false,"given":"Vasundra","family":"Tour\u00e9","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-4250-3983","authenticated-orcid":false,"given":"Jan","family":"Armida","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3248-7899","authenticated-orcid":false,"given":"Sabine","family":"\u00d6sterle","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2026,7,14]]},"reference":[{"key":"R1","doi-asserted-by":"publisher","DOI":"10.3233\/SHTI200344","article-title":"SPHN - the Swiss Personalized Health Network Initiative","volume":"270","author":"Lawrence","journal-title":"Stud Health Technol Inform"},{"issue":"1","key":"R2","doi-asserted-by":"publisher","DOI":"10.1038\/sdata.2016.18","article-title":"The FAIR Guiding Principles for scientific data management and stewardship","volume":"3","author":"Wilkinson","journal-title":"Sci Data"},{"key":"R3","unstructured":"Weibel SL . Bates MJ Raton M , editors. Dublin Core Metadata Initiative: A Personal History Encyclopedia of Library and Information Science. CRC Press; 2009. URL: http:\/\/www.oclc.org\/research\/publications\/library\/2009\/weibel-elis.pdf [Accessed 30-06-2026]"},{"issue":"1","key":"R4","doi-asserted-by":"publisher","first-page":"107","DOI":"10.2218\/ijdc.v3i1.45","article-title":"Data Documentation Initiative: Toward a Standard for the Social Sciences","volume":"3","author":"Vardigan","journal-title":"Int J Digit Curation"},{"key":"R5","unstructured":"ISO 14721:2003: Space Data and Information Transfer Systems \u2013 Open Archival Information System (OAIS) \u2013 Reference Model. International Organization for Standardization; 2003. URL: https:\/\/www.iso.org\/standard\/87471.html [Accessed 30-06-2026]"},{"issue":"5","key":"R6","doi-asserted-by":"publisher","first-page":"34","DOI":"10.1038\/scientificamerican0501-34","article-title":"The Semantic Web","volume":"284","author":"Berners-Lee","journal-title":"Sci Am"},{"key":"R7","unstructured":"Home page of W3C. W3C. URL: https:\/\/www.w3.org\/ [Accessed 22-12-2025]"},{"key":"R8","unstructured":"DCMI Metadata Terms. DublinCore. URL: https:\/\/www.dublincore.org\/specifications\/dublin-core\/dcmi-terms\/ [Accessed 22-12-2025]"},{"key":"R9","unstructured":"Data Catalog Vocabulary (DCAT) - version 3. W3C. URL: https:\/\/www.w3.org\/TR\/vocab-dcat-3\/ [Accessed 22-12-2025]"},{"key":"R10","unstructured":"DCAT-AP 3.0. GitHub. URL: https:\/\/semiceu.github.io\/DCAT-AP\/releases\/3.0.0\/ [Accessed 22-12-2025]"},{"key":"R11","unstructured":"DCAT-AP CH - version 2. DCAT-AP CH. URL: https:\/\/www.dcat-ap.ch\/releases\/2.0\/dcat-ap-ch.html [Accessed 22-12-2025]"},{"key":"R12","unstructured":"FAIR Data Point Ontology. GitHub. URL: https:\/\/github.com\/FAIRDataTeam\/FDP-O [Accessed 22-12-2025]"},{"key":"R13","unstructured":"Describing linked datasets with the void vocabulary. W3C. URL: https:\/\/www.w3.org\/TR\/void\/ [Accessed 22-12-2025]"},{"key":"R14","unstructured":"HealthDCAT-AP release 5. HealthDCAT-AP. URL: https:\/\/healthdataeu.pages.code.europa.eu\/healthdcat-ap\/releases\/release-7\/ [Accessed 22-12-2025]"},{"key":"R15","unstructured":"Health-RI metadata schemas. GitHub. URL: https:\/\/github.com\/Health-RI\/health-ri-metadata [Accessed 22-12-2025]"},{"key":"R16","unstructured":"Data driven health & life sciences: connect, share and reuse. Health-RI. URL: https:\/\/www.health-ri.nl\/en [Accessed 22-12-2025]"},{"key":"R17","unstructured":"DCAT-AP-NL 3.0. Geonovum Specificaties. URL: https:\/\/docs.geostandaarden.nl\/dcat\/dcat-ap-nl30\/ [Accessed 22-12-2025]"},{"issue":"1","key":"R18","doi-asserted-by":"publisher","first-page":"163","DOI":"10.1162\/dint_a_00160","article-title":"FAIR Data Point: a FAIR-oriented approach for metadata publication","volume":"5","author":"da Silva Santos","journal-title":"Data Intelligence"},{"key":"R19","unstructured":"Unofficial proposal draft. FAIR Data Point specifications. URL: https:\/\/specs.fairdatapoint.org\/ [Accessed 22-12-2025]"},{"key":"R20","unstructured":"Datacatalogus. Health-RI Catalogue. URL: https:\/\/catalogus.healthdata.nl\/en [Accessed 22-12-2025]"},{"key":"R21","unstructured":"Maelstrom catalogue. Maelstrom Research. URL: https:\/\/www.maelstrom-research.org\/page\/catalogue [Accessed 22-12-2025]"},{"issue":"5","key":"R22","doi-asserted-by":"publisher","first-page":"1372","DOI":"10.1093\/ije\/dyx180","article-title":"Software application profile: opal and mica: open-source software solutions for epidemiological data management, harmonization and dissemination","volume":"46","author":"Doiron","journal-title":"Int J Epidemiol"},{"issue":"7","key":"R23","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0200926","article-title":"Fostering population-based cohort data discovery: the maelstrom research cataloguing toolkit","volume":"13","author":"Bergeron","journal-title":"PLoS One"},{"key":"R24","unstructured":"Metadata catalogue of Switzerland. I14Y Interoperability platform. URL: https:\/\/www.i14y.admin.ch\/en\/home [Accessed 22-12-2025]"},{"key":"R25","unstructured":"Health Study Hub homepage. Health Study Hub. URL: https:\/\/health-study-hub.de\/ [Accessed 22-12-2025]"},{"key":"R26","doi-asserted-by":"publisher","DOI":"10.2196\/63906","article-title":"Toward a domain-overarching metadata schema for making health research studies FAIR (findable, accessible, interoperable, and reusable): development of the NFDI4Health metadata schema","volume":"13","author":"Abaza","journal-title":"JMIR Med Inform"},{"key":"R27","unstructured":"DataCite Metadata Working Group. DataCite metadata schema for the publication and citation of research data and other research outputs (version 46). DataCite eV. 2024. URL: https:\/\/doi.org\/10.14454\/mzv1-5b55 [Accessed 07-07-2026]"},{"key":"R28","unstructured":"Protocol registration data element definitions for interventional and observational studies. ClinicalTrials.gov. URL: https:\/\/clinicaltrials.gov\/policy\/protocol-definitions [Accessed 22-12-2025]"},{"key":"R29","doi-asserted-by":"crossref","unstructured":"Braunstein ML . Health Informatics on FHIR: How HL7\u2019s API Is Transforming Healthcare. 2nd ed. Springer International Publishing; 2022. [doi: 10.1007\/978-3-030-91563-6] ISBN: 978-3-030-91562-9","DOI":"10.1007\/978-3-030-91563-6"},{"key":"R30","unstructured":"Abaza H Shutsko A Golebiewski M et al. The NFDI4Health Metadata Schema (v3_3). Fachrepositorium Lebenswissenschaften; 2023. [doi: 10.4126\/FRL01-006472531]"},{"issue":"6","key":"R31","doi-asserted-by":"publisher","DOI":"10.2196\/27591","article-title":"A national, semantic-driven, three-pillar strategy to enable health data secondary usage interoperability for research within the Swiss personalized health network: methodological study","volume":"9","author":"Gaudet-Blavignac","journal-title":"JMIR Med Inform"},{"issue":"1","key":"R32","doi-asserted-by":"publisher","DOI":"10.1038\/s41597-023-02028-y","article-title":"FAIRification of health-related data using semantic web technologies in the Swiss Personalized Health Network","volume":"10","author":"Tour\u00e9","journal-title":"Sci Data"},{"key":"R33","unstructured":"SPHN Metadata Catalog. FAIR Data Point. URL: https:\/\/fdp.dcc.sib.swiss\/ [Accessed 22-12-2025]"},{"key":"R34","unstructured":"SPHN Schema Scope. Swiss Institute of Bioinformatics. URL: https:\/\/schemascope.dcc.sib.swiss\/ [Accessed 22-12-2025]"},{"key":"R35","unstructured":"Qualitative metadata template. GitLab. URL: https:\/\/git.dcc.sib.swiss\/sphn-semantic-framework\/metadata-collection\/-\/tree\/main\/Qualitative%20Metadata [Accessed 22-12-2025]"},{"key":"R36","unstructured":"SPHN Metacato. GitLab. URL: https:\/\/git.dcc.sib.swiss\/sphn-semantic-framework\/metacato [Accessed 22-12-2025]"},{"key":"R37","unstructured":"SPHN Metadata Catalog Schema. GitLab. 2025. URL: https:\/\/sphn.gitlab.io\/sphn-metacat-schema\/ [Accessed 19-11-2025]"},{"key":"R38","unstructured":"SPHN Metadata Generator. GitLab. URL: https:\/\/git.dcc.sib.swiss\/sphn-semantic-framework\/metadata-collection\/-\/tree\/main\/Quantitative%20Metadata [Accessed 22-12-2025]"},{"key":"R39","unstructured":"GraphDB. Ontotext. URL: https:\/\/www.ontotext.com\/products\/graphdb\/ [Accessed 22-12-2025]"},{"key":"R40","unstructured":"Unni D . SHACL Shapes for the SPHN Metadata Catalog Schema (Version 020). Zenodo; 2026. [doi: 10.5281\/zenodo.20071838]"},{"key":"R41","unstructured":"Unni D \u00d6sterle S . SPHN Metadata Catalog Schema (Version 020). Zenodo; 2026. [doi: 10.5281\/zenodo.20071707]"},{"key":"R42","doi-asserted-by":"crossref","unstructured":"Bizer C Heath T Data B . The Story So Far Linking the World\u2019s Information. ACM; 2023:115-143. [doi: 10.1145\/3591366.3591378]","DOI":"10.1145\/3591366.3591378"},{"key":"R43","unstructured":"SPHN Schema Scope. GitLab. URL: https:\/\/git.dcc.sib.swiss\/sphn-semantic-framework\/schemascope [Accessed 22-12-2025]"},{"key":"R44","unstructured":"SPHN Dataset. GitLab. URL: https:\/\/git.dcc.sib.swiss\/sphn-semantic-framework\/sphn-schema\/-\/tree\/master\/dataset?ref_type=heads [Accessed 07-05-2026]"},{"key":"R45","doi-asserted-by":"crossref","unstructured":"Chang W Cheng J Allaire J et al. Shiny: Web Application Framework for R. Comprehensive R Archive Network (CRAN); 2025. [doi: 10.32614\/CRAN.package.shiny]","DOI":"10.32614\/CRAN.package.shiny"},{"key":"R46","doi-asserted-by":"crossref","unstructured":"Almende BV Thieurmel B . visNetwork: Network Visualization Using \u201cvisJs\u201d Library. Comprehensive R Archive Network (CRAN); 2025. [doi: 10.32614\/CRAN.package.visNetwork]","DOI":"10.32614\/CRAN.package.visNetwork"},{"key":"R47","doi-asserted-by":"crossref","unstructured":"Cs\u00e1rdi G Nepusz T Traag V et al. igraph: Network Analysis and Visualization in R. Comprehensive R Archive Network (CRAN); [doi: 10.32614\/CRAN.package.igraph]","DOI":"10.32614\/CRAN.package.igraph"},{"key":"R48","unstructured":"SWITCH Homepage. SWITCH. URL: https:\/\/www.switch.ch\/en [Accessed 22-12-2025]"},{"key":"R49","unstructured":"Unified gateway for VMs, containers, and AI. Traefik Labs. URL: https:\/\/traefik.io\/ [Accessed 22-12-2025]"},{"key":"R50","unstructured":"Swiss Personalized Oncology National Data Stream - Retrospective, melanoma, colorectal cancer, non-small cell lung cancer, breast cancer. FAIR Data Point. URL: https:\/\/fdp.dcc.sib.swiss\/dataset\/7dafbf3c-39f4-51b3-9e18-bfdca1ac7363 [Accessed 07-05-2026]"},{"key":"R51","unstructured":"FAIR Data Point Index. FAIR Data Point. URL: https:\/\/home.fairdatapoint.org\/ [Accessed 22-12-2025]"},{"key":"R52","unstructured":"SPO-NDS RDF Schema 2025. SPHN Schema Scope. 2025. URL: https:\/\/schemascope.dcc.sib.swiss\/?project=SPO-NDS&version=2025.1 [Accessed 07-05-2026]"},{"key":"R53","unstructured":"SPO-NDS RDF Schema 2025.1. GitLab. 2025. URL: https:\/\/git.dcc.sib.swiss\/project-space\/spo\/rdf-schema\/-\/blob\/main\/version-2\/schema\/SPO_dataset_2025_1_20250123.ttl?ref_type=heads [Accessed 07-05-2026]"},{"key":"R54","unstructured":"SPO-NDS RDF Schema 2025.1. Documentation. 2025. URL: https:\/\/www.biomedit.ch\/rdf\/sphn-schema\/spo\/2025\/1 [Accessed 07-05-2026]"},{"key":"R55","unstructured":"The SPHN RDF Schema. SPHN Semantic Framework Documentation. 2025. URL: https:\/\/www.biomedit.ch\/rdf\/sphn-schema\/sphn [Accessed 17-11-2025]"},{"key":"R56","unstructured":"SPHN Schema Scope \u2013 retrospective cohort (SPO-NDS 2025.1). SchemaScope. URL: https:\/\/schemascope.dcc.sib.swiss\/?project=SPO-NDS&version=2025.1&dataset=Retrospective-cohort [Accessed 07-05-2026]"},{"key":"R57","unstructured":"SPO-NDS retrospective cohort - FDP dataset void distribution. SPHN FAIR Data Point. URL: https:\/\/fdp.dcc.sib.swiss\/void-dataset\/f99141bc-617e-5aba-b4f9-6f9a26d7b7c7?format=ttl [Accessed 22-12-2025]"},{"key":"R58","unstructured":"European Genome-phenome Archive homepage. European Genome-phenome Archive. URL: https:\/\/ega-archive.org\/ [Accessed 22-12-2025]"},{"key":"R59","unstructured":"Zenodo homepage. Zenodo. URL: https:\/\/zenodo.org\/ [Accessed 22-12-2025]"},{"key":"R60","doi-asserted-by":"crossref","unstructured":"Wodke JA Gierend K Johns M et al. MIRAPIE: proposing a harmonising framework as a minimal community standard for biomedical provenance documentation. SSRN. Preprint posted online on Nov 16, 2025. [doi: 10.2139\/ssrn.5327042]","DOI":"10.2139\/ssrn.5327042"},{"key":"R61","unstructured":"HealthDCAT AP editor. European Health Information Portal. 2025. URL: https:\/\/www.healthinformationportal.eu\/ [Accessed 26-06-2026]"},{"key":"R62","unstructured":"Unni D . Metadata collection. Zenodo; 2025. [doi: 10.5281\/zenodo.17292541]"},{"key":"R63","unstructured":"Swiss Personalized Health Network (SPHN). SPHN Dataset release 2026.1. Zenodo; 2026. [doi: 10.5281\/zenodo.20073311]"},{"key":"R64","unstructured":"Unni D . SPHN FAIR Data Point. Zenodo; 2025. [doi: 10.5281\/zenodo.17865879]"},{"key":"R65","unstructured":"Witte H . SPHN Schema Scope. Zenodo; 2025. [doi: 10.5281\/zenodo.17897809]"},{"key":"R66","unstructured":"Unni D . SPHN Metacato. Zenodo; 2025. [doi: 10.5281\/zenodo.17865802]"}],"container-title":["JMIR Medical Informatics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/medinform.jmir.org\/2026\/1\/e90146","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T22:24:28Z","timestamp":1785536668000},"score":1,"resource":{"primary":{"URL":"https:\/\/medinform.jmir.org\/2026\/1\/e90146"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,14]]},"references-count":66,"URL":"https:\/\/doi.org\/10.2196\/90146","relation":{},"ISSN":["2291-9694"],"issn-type":[{"value":"2291-9694","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,14]]},"article-number":"v14i1e90146"}}