Prof. Dr. Martin Dugas
University of Münster, Germany
Martin Dugas is Director of the Institute of Medical Informatics at the University of Münster, Germany. He holds a doctoral degree in human medicine as well as a diploma in computer science. His research is focused on informatics for personalized medicine, in particular medical data models, electronic health records, single source information systems, cancer genomics and next generation sequencing (NGS) data analysis.
He received the venia legendi for medical informatics in 2002 at the University of Munich, Germany. From 2004 to 2005 he was a research fellow at Siemens Medical Health Services, USA. Since 2005 he is professor of Medical Informatics at the University of Münster. Since 2011 he holds a dual faculty membership (medicine as well as mathematics and informatics). Since 2013 he is a member of the ERCIS director’s board (European Research Center for Information Systems). In 2011 he and his team established the Portal of Medical Data Models, a research information infrastructure funded by the German Research Foundation.
Title of Session: Portal of Medical Data Models: Best Practice Sharing in Clinical Research
Description of Session:
A huge amount of data is collected either through routine documentation forms for electronic health records (EHRs) or as case report forms (CRFs) for clinical studies. Data integration between routine care and clinical research (“real life data”) requires compatible data models. The vast majority of those forms is not available to the clinical research community. Based on this lack of transparency harmonization of data models in health care is extremely cumbersome, thus work and know-how of completed clinical studies and routine documentation in hospitals are hard to be re-used.
The Portal of Medical Data Models (MDM-Portal, https://medical-data-models.org) provides Europe`s largest public collection of medical forms. It is a registered European research information infrastructure, developed by the Institute of Medical Informatics, University of Münster in Germany. Sustainability of MDM is achieved through collaboration with the University Library of Münster. MDM contains predominantly CRFs from clinical research, but also routine documentation forms from EHRs. At present (as of 09/2018) it provides more than 18,000 system-independent forms (thereof ~12,000 from clinical studies), more than 400,000 data elements for more than 1200 registered users. Among those, numerous core data sets, common data elements or data standards, code lists and value sets are provided, which can be exported in 18 formats e.g. CDISC ODM, HL7 FHIR, OpenClinica, REDCap, Excel or SPSS. MDM provides full version control. Most data elements are annotated with expert curated semantic codes, in particular UMLS codes. Semantic coding can be leveraged to compare different data models, even between different languages, e.g. CRFs from clinical studies regarding the same disease.
Transparency of data models can foster best practice sharing. The MDM portal is available as information infrastructure to support this task.
MDM as an information infrastructure for clinical research: What services are available?
Benefits of best practice sharing regarding data models in clinical research
Overview about metadata formats and semantic coding