Enriching knowledge and enhancing care through health data

Medical Data Models (hosted by the University of Münster)

MDM-Portal (Medical Data-Models) is a registered European research infrastructure (http://portal.meril.eu/converis-esf/publicweb/research_infrastructure/3574).

It is meta-data registry for creating, analysing, sharing and reusing medical forms, developed by the Institute of Medical Informatics, University of Muenster in Germany.

Electronic forms for documentation of patient data are an integral part within the workflow of physicians. A huge amount of data is collected either through routine documentation forms (EHRs) for electronic health records or as case report forms (CRFs) for clinical trials. This raises major scientific challenges for health care, since different health information systems are not necessarily compatible with each other and thus information exchange of structured data is hampered.

Software vendors provide a variety of individual documentation forms according to their standard contracts, which function as isolated applications. Furthermore, free availability of those forms is rarely the case. Currently only a small fraction of medical forms is freely accessible.

Based on this lack of transparency harmonization of data models in health care is extremely cumbersome, thus work and know-how of completed clinical trials and routine documentation in hospitals are hard to be re-used.

The MDM-Portal serves as an infrastructure for academic (non-commercial) medical research to contribute a solution to this problem. It already contains more than 7,000 system-independent forms (CDISC ODM Format, www.cdisc.org, Operational Data Model) with more than 550,000 data-elements. This enables researchers to view, discuss, download and export forms in most common technical formats such as ODM, FHIR, PDF, Excel, SQL, SPSS, R, etc. A growing user community will lead to a growing database of medical forms. In this matter, we would like to encourage all medical researchers to register and add forms and discuss existing forms.