An infrastructure to share medical data models
MDM-Portal (Medical Data Models) is a meta-data registry for creating, analyzing, sharing and reusing medical forms. It serves as an infrastructure for academic (non-commercial) medical research to contribute a solution to this problem. It contains forms in the system-independent CDISC Operational Data Model (ODM) format with more than 500,000 data-elements. The Portal provides numerous core data sets, common data elements or data standards, code lists and value sets. This enables researchers to view, discuss, download and export forms in most common technical formats such as PDF, CSV, 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.
Reusing clinical metadata
Electronic forms for the documentation of patient data are a crucial part within the workflow of physicians. 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 trials. This raises major scientific challenges for health care, since different health information systems are not necessarily compatible with each other and information exchange of structured data is hampered. Software vendors provide a variety of individual documentation forms without publishing them. Currently, less than 5 % of medical forms are freely accessible. This lack of transparency impedes the harmonization processes and reuse of data models in health care. MDM is a research infrastructure for standardized data management and FAIR principles in medicine. Medical data shall be findable, accessible, interoperable and reusable (www.force11.org/fairprinciples). Key problems in the domain of medicine are lack of transparency regarding data models and similar, but incompatible data.