Universität zu Köln

von Martial, Sophia, Brix, Tobias J., Klotz, Luisa, Neuhaus, Philipp, Berger, Klaus, Warnke, Clemens, Meuth, Sven G., Wiendl, Heinz and Dugas, Martin ORCID: 0000-0001-9740-0788 (2019). EMR-integrated minimal core dataset for routine health care and multiple research settings: A case study for neuroinflammatory demyelinating diseases. PLoS One, 14 (10). SAN FRANCISCO: PUBLIC LIBRARY SCIENCE. ISSN 1932-6203

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Abstract

Although routine health care and clinical trials usually require the documentation of similar information, data collection is performed independently from each other, resulting in redundant documentation efforts. Standardizing routine documentation can enable secondary use for medical research. Neuroinflammatory demyelinating diseases (NIDs) represent a heterogeneous group of diseases requiring further research to improve patient management. The aim of this work is to develop, implement and evaluate a minimal core dataset in routine health care with a focus on secondary use as case study for NIDs. Therefore, a draft minimal core dataset for NIDs was created by analyzing routine, clinical trial, registry, biobank documentation and existing data standards for NIDs. Data elements (DEs) were converted into the standard format Operational Data Model, semantically annotated and analyzed via frequency analysis. The analysis produced 1958 DEs based on 864 distinct medical concepts. After review and finalization by an interdisciplinary team of neurologists, epidemiologists and medical computer scientists, the minimal core dataset (NID CDEs) consists of 46 common DEs capturing disease-specific information for reuse in the discharge letter and other research settings. It covers the areas of diagnosis, laboratory results, disease progress, expanded disability status scale, therapy and magnetic resonance imaging findings. NID CDEs was implemented in two German university hospitals and a usability study in clinical routine was conducted (participants n = 16) showing a good usability (Mean SUS = 75). From May 2017 to February 2018, 755 patients were documented with the NID CDEs, which indicates the feasibility of developing a minimal core dataset for structured documentation based on previously used documentation standards and integrating the dataset into clinical routine. By sharing, translating and reusing the minimal dataset, a transnational harmonized documentation of patients with NIDs might be realized, supporting interoperability in medical research.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code von Martial, Sophia UNSPECIFIED UNSPECIFIED UNSPECIFIED Brix, Tobias J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Klotz, Luisa UNSPECIFIED UNSPECIFIED UNSPECIFIED Neuhaus, Philipp UNSPECIFIED UNSPECIFIED UNSPECIFIED Berger, Klaus UNSPECIFIED UNSPECIFIED UNSPECIFIED Warnke, Clemens UNSPECIFIED UNSPECIFIED UNSPECIFIED Meuth, Sven G. UNSPECIFIED UNSPECIFIED UNSPECIFIED Wiendl, Heinz UNSPECIFIED UNSPECIFIED UNSPECIFIED Dugas, Martin UNSPECIFIED orcid.org/0000-0001-9740-0788 UNSPECIFIED
URN:	urn:nbn:de:hbz:38-130839
DOI:	10.1371/journal.pone.0223886
Journal or Publication Title:	PLoS One
Volume:	14
Number:	10
Date:	2019
Publisher:	PUBLIC LIBRARY SCIENCE
Place of Publication:	SAN FRANCISCO
ISSN:	1932-6203
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language SECONDARY USE; DIAGNOSTIC-CRITERIA; DATA ELEMENTS; SCLEROSIS; QUALITY; TRIALS Multiple languages Multidisciplinary Sciences Multiple languages
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/13083