Portal of Medical Data Models

Each day large amounts of data are gathered by electronic health records. Because health care information systems are not compatible among themselves in general, structured data cannot easily be exchanged in between different institutions.{{cite journal|last1=Dugas|first1=Martin|title=Missing semantic annotation in databases. The root cause for data integration and migration problems in information systems.|journal=Methods of Information in Medicine|date=2014|volume=6|issue=53|pages=516–517|doi=10.3414/ME14-04-0002}} Only a small part of all medical forms are openly available.{{cite journal|last1=Dugas|first1=M.|last2=Jöckel|first2=K.-H.|last3=Friede|first3=T.|last4=Gefeller|first4=O.|last5=Kieser|first5=M.|last6=Marschollek|first6=M.|last7=Ammenwerth|first7=E.|last8=Röhrig|first8=R.|last9=Knaup-Gregori|first9=P.|last10=Prokosch|first10=H.-U.|title=Memorandum "Open Metadata"|journal=Methods of Information in Medicine|date=2015|volume=54|issue=4|doi=10.3414/ME15-05-0007|pmid=26108979|pages=376–8}}{{cite journal|last1=Dugas|first1=Martin|title=Time for open access to all medical documentation forms.|journal=British Medical Journal|date=2013|volume=347|doi=10.1136/bmj.f5824|pmid=24108154|pages=f5824}} Through this shortness of transparency, data-models adjustment processes in health care are being vastly interfered.{{cite journal|last1=Dugas|first1=Martin|title=Sharing clinical trial data|journal=The Lancet|date=2016|volume=387|issue=10035|page=2287|doi=10.1016/S0140-6736(16)30683-3|doi-access=free}} Know-how of current or terminated studies and clinical documentation cannot be reused.{{cite journal|last1=Dugas|first1=Martin|last2=Neuhaus|first2=Philipp|last3=Meidt|first3=Alexandra|last4=Doods|first4=Justin|last5=Storck|first5=Michael|last6=Bruland|first6=Philipp|last7=Varghese|first7=Julian|title=Portal of medical data models: information infrastructure for medical research and healthcare|journal=Database (Oxford)|date=2016|doi=10.1093/database/bav121|pmid=26868052|volume=2016|pmc=4750548|pages=bav121}}

Primary goals for medical data models are releasing reliable medical forms and data models, establishing transparent and interoperable standards for medical research and raising efficiency in the design of case report files. Besides improving the quality of documentation forms by reusing reliable forms and data-models (Secondary Use, Best Practise), the comparability of research outcomes shall be enhanced.

The portal is mainly established for medical professionals, for example:

• Medical doctors
• Medical Information Scientist
• Data manager
• Medical information specialist

Currently, the portal contains more than 20.000 forms with more than 350.000 active data elements, making it Europe’s largest open-access portal for medical forms (March 2019). Available forms are: clinical research forms (Case Report Forms, Register-Items), routine documentation (e. g. EHR-forms) and quality assurance (e.g. data from the AQUA-Institute). Coded via UMLS-Metathesaurus, much content is available for semantic analyses.{{cite journal|last1=Christen|first1=Victor|title=Annotation und Management heterogener medizinischer Studienformulare|journal=GI-Workshop on Foundations of Databases|date=2015|pages=60–65|url=http://ceur-ws.org/Vol-1366/paper12.pdf}}{{cite journal|last1=Dugas|first1=Martin|last2=Meidt|first2=Alexandra|last3=Neuhaus|first3=Philipp|last4=Stork|first4=Michael|last5=Varghese|first5=Julian|title=ODMedit: uniform semantic annotation for data integration in medicine based on a public metadata repository|journal=BMC Medical Research Methodology|date=1 June 2015|volume=16|issue=65|page=65 |doi=10.1186/s12874-016-0164-9|pmid=27245222 |pmc=4888420 |doi-access=free }} The content of the forms are provided in the standard data type for medical research (CDISC ODM) and, besides the original format, available in various data types, for example REDCap, MACRO, CDA, CSV, ADL as well as in Fast Healthcare Interoperability Resources (FHIR) Questionnaire Format. As concluded by the FDA, the CDISC ODM-XML-Format for documentation in pharmaceutical research will be mandatory within the next two years, the portal already meets state of the art demands.

In collaboration with the university and regional library in Münster, all gathered files are archived and allocated to every German library, securing a sustainable use of this meta-data-repository. The medical-data-portal is known as German (RIsources) and European research infrastructure (MERIL) and is developed by the Institute of Medical Informatics, University of Münster, Germany.

The project is funded by the German Research Foundation (DFG, grant no. DU 352/11-1)

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{{cite web |url=http://risources.dfg.de/detail/RI_00396_de.html |title=DFG – Portal für Medizinische Datenmodelle (MDM) |last1= |first1= |last2= |first2= |date= |publisher=DFG|accessdate=27 April 2016}}

{{cite web|url=http://portal.meril.eu/converis-esf/publicweb/research_infrastructure/3574|title=MERIL – List of Research Infrastructure – MDM – Portal of Medical Data Models|publisher=MERIL|accessdate=26 January 2016|url-status=dead|archiveurl=https://web.archive.org/web/20160427093841/http://portal.meril.eu/converis-esf/publicweb/research_infrastructure/3574|archivedate=27 April 2016}}

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• [https://medical-data-models.org/ Official Portal webpage]

Category:Medical research in Europe