title: Towards shared patient records: an architecture for using routine data for nationwide research.
abstract: Ubiquitous information is currently one of the most challenging slogans in medical informatics research. An adequate architecture for shared electronic patient records is needed which can use data for multiple purposes and which is extensible for new research questions. We introduce eardap as architecture for using routine data for nationwide clinical research in a multihospital environment. eardap can be characterized as terminology-based. Main advantage of our approach is the extensibility by new items and new research questions. Once the definition of items for a research question is finished, a consistent, corresponding database can be created without any informatics skills. Our experiences in pediatric oncology in Germany have shown the applicability of eardap. The functions of our core system were in routine clinical use in several hospitals. We validated the terminology management system (TMS) and the module generation tool with the basic data set of pediatric oncology. The multiple usability depends mainly on the quality of item planning in the TMS. High quality harmonization will lead to a higher amount of multiply used data. When using eardap, special emphasis is to be placed on interfaces to local hospital information systems and data security issues.
authors.affiliation: University of Heidelberg, Department of Medical Informatics, Im Neuenheimer Feld 400, D-69120 Heidelberg, Germany. petra_knaup@med.uni-heidelberg.de
authors.forename: Petra
authors.initials: P
authors.lastname: Knaup
authors.forename: Sebastian
authors.initials: S
authors.lastname: Garde
authors.forename: Angela
authors.initials: A
authors.lastname: Merzweiler
authors.forename: Norbert
authors.initials: N
authors.lastname: Graf
authors.forename: Freimut
authors.initials: F
authors.lastname: Schilling
authors.forename: Ralf
authors.initials: R
authors.lastname: Weber
authors.forename: Reinhold
authors.initials: R
authors.lastname: Haux
mesh_terms: D035843:Biomedical Research / Q000458:organization & administration*; D016494:Computer Security; D003199:Computer Systems; D003628:Database Management Systems / Q000458:organization & administration*; D005060:Europe; D033181:Information Dissemination / Q000379:methods*; D016247:Information Storage and Retrieval / Q000379:methods; D008491:Medical Informatics Applications; D008498:Medical Record Linkage / Q000379:methods*; D016347:Medical Records Systems, Computerized / Q000458:organization & administration*; D012042:Registries; D017216:Telemedicine / Q000379:methods / Q000458:organization & administration