Experiences with an Interoperable Data Acquisition Platform for Multi-centric Research Networks Based on HL7 CDA

Abstract

Summary Objectives: Today’s increasing specialization of medicine necessitates the integration oftelematic platforms for cross-institutional cooperation. In orderto leverage the strengths of each cooperating institution a centralized unified storage using shared electronic patient records (EPRs) as well as secured remote data entry capabilities for supporting collaborative clinical research and care is essential. The objective of this project was to develop and introduce into routine use such a shared remote data entry (RDE) platform for the German multicentric Epidermolysis Bullosa (EB) network. Methods: An existing telematic application was extended by a remote data entry (RDE) module enabling thestorage of structured data and pedigrees. HL7 Clinical Document Architecture (CDA) was chosen as a suitable standardized storage format that provides flexibility and future interoperability. Flexible data entry forms adaptable to distinct medical domains were implemented using XML-based technologies. Results: A flexible and comprehensive ePR/RDE platform was successfully implemented in the German EB network. A set of specific data entry forms was created to fully cover the network’s documentation needs. The platform has been in productive use since 2005. Conclusions: Standardized documentation by using HL7 CDA to store the medical research data as an EPR can contribute to high interoperability and an easier integration of heterogeneous health care information systems. Existing XML technologies offer a high degree of flexibility and adaptability to distinct medical domains. The ongoing development of standards (e.g. HL7 CDA R2) and interfaces (CDA/CDISC bridge) could further improve semantic and syntactic interoperability.

Unlocking Data for Clinical Research – The German i2b2 Experience

“…For scenario C, a locally developed EDC system used with the German Epidermolysis Bullosa Research Network [25] was integrated with i2b2. Ontology metadata was transferred manually into an Excel TM (Microsoft Inc.) spreadsheet containing the concept and hierarchy followed by scriptbased conversion into the i2b2 ontology format.…”