Medical data models portal

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The portal for medical data models (MDM portal) is a recognized German and European research infrastructure for medical research. It is an open access metadata - repository for creating, analyzing, sharing and reuse of medical forms, which was built for scientific purposes.

background

Huge amounts of data are recorded on a daily basis in medical forms in the form of electronic patient records and clinical study forms . Since the information systems in the healthcare system are generally not compatible with one another, data cannot be exchanged in a structured form between different institutions. Only a small fraction of all medical forms are currently publicly available. This lack of transparency significantly hinders processes for reconciling data models in healthcare. Know-how from already completed or ongoing studies and clinical documentation cannot be reused.

Goals and target groups

The primary goals of the portal for medical data models are the publication of proven medical forms and data models, the establishment of transparent and interoperable standards in medical research and the increase in efficiency in the creation of new study forms. In addition to improving the quality of documentation forms by reusing tried and tested forms and data models (secondary use, best practice), the comparability of study results is to be promoted.

The portal is aimed primarily at medical professionals, including:

  • Study doctors
  • Medical IT specialists
  • Data managers
  • Medical documentaries

Content and functions

The portal currently contains over 20,000 forms with over 350,000 active data elements, making it one of the world's largest open access portals for medical forms (as of March 2019). There are forms from clinical research (e.g. case report forms , register items), routine documentation (e.g. HIS forms) and quality assurance (e.g. data sets from the AQUA Institute ). Coding using the UMLS metathesaurus makes a lot of content accessible for semantic analysis. The form contents are stored in the standard format for medical studies ( CDISC ODM) and, in addition to the original format, can be exported in many different formats, including REDCap, MACRO, CDA , CSV , ADL and the current Fast Healthcare Interoperability Resources (FHIR) questionnaire format. Since the American FDA has set a binding standard for documentation in drug studies with the CDISC ODM-XML format , which is to be implemented in less than two years, the portal is based on current regulatory requirements.

sustainability

The close cooperation with the University and State Library in Münster , which archives the data recorded in the portal and makes it available to all German libraries, ensures permanent and sustainable dissemination and use of this metadata repository. The portal for medical data models is recognized as a German (RIsources) and European research infrastructure (MERIL) and is being developed by the Institute for Medical Informatics at the Westphalian Wilhelms University in Münster.

advancement

The project is funded by the German Research Foundation under the funding code DU 352 / 11-1.

Web links

credentials

  1. DFG - Portal for Medical Data Models (MDM). Retrieved April 27, 2016 .
  2. MERIL - List of Research Infrastructure - MDM - Portal of Medical Data Models. (No longer available online.) January 26, 2016, archived from the original on April 27, 2016 ; Retrieved April 27, 2016 . Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. @1@ 2Template: Webachiv / IABot / portal.meril.eu
  3. ^ M. Dugas: Missing semantic annotation in databases. The root cause for data integration and migration problems in information systems. In: Methods of information in medicine. Volume 53, number 6, 2014, pp. 516-517, doi : 10.3414 / ME14-04-0002 , PMID 25377893 .
  4. M. Dugas, KH Jöckel, T. Friede, O. Gefeller, M. Kieser, M. Marschollek, E. Ammenwerth, R. Röhrig, P. Knaup-Gregori, HU Prokosch: Memorandum "Open Metadata". Open Access to Documentation Forms and Item Catalogs in Healthcare. In: Methods of information in medicine. Volume 54, number 4, 2015, pp. 376-378, doi : 10.3414 / ME15-05-0007 , PMID 26108979 .
  5. M. Dugas: Time for open access to all medical documentation forms. In: BMJ (Clinical research ed.). Volume 347, 2013, p. F5824, PMID 24108154 .
  6. Martin Dugas: Sharing clinical trial data . In: The Lancet . 387, No. 10035, 2016, p. 2287. doi : 10.1016 / S0140-6736 (16) 30683-3 .
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