Dugas Martin, Neuhaus Philipp, Meidt Alexandra, Doods Justin, Storck Michael, Bruland Philipp, Varghese Julian
Institute of Medical Informatics, University of Münster, Germany European Research Center for Information Systems (ERCIS)
Institute of Medical Informatics, University of Münster, Germany.
Database (Oxford). 2016 Feb 11;2016. doi: 10.1093/database/bav121. Print 2016.
Information systems are a key success factor for medical research and healthcare. Currently, most of these systems apply heterogeneous and proprietary data models, which impede data exchange and integrated data analysis for scientific purposes. Due to the complexity of medical terminology, the overall number of medical data models is very high. At present, the vast majority of these models are not available to the scientific community. The objective of the Portal of Medical Data Models (MDM, https://medical-data-models.org) is to foster sharing of medical data models.
MDM is a registered European information infrastructure. It provides a multilingual platform for exchange and discussion of data models in medicine, both for medical research and healthcare. The system is developed in collaboration with the University Library of Münster to ensure sustainability. A web front-end enables users to search, view, download and discuss data models. Eleven different export formats are available (ODM, PDF, CDA, CSV, MACRO-XML, REDCap, SQL, SPSS, ADL, R, XLSX). MDM contents were analysed with descriptive statistics.
MDM contains 4387 current versions of data models (in total 10,963 versions). 2475 of these models belong to oncology trials. The most common keyword (n = 3826) is 'Clinical Trial'; most frequent diseases are breast cancer, leukemia, lung and colorectal neoplasms. Most common languages of data elements are English (n = 328,557) and German (n = 68,738). Semantic annotations (UMLS codes) are available for 108,412 data items, 2453 item groups and 35,361 code list items. Overall 335,087 UMLS codes are assigned with 21,847 unique codes. Few UMLS codes are used several thousand times, but there is a long tail of rarely used codes in the frequency distribution.
Expected benefits of the MDM portal are improved and accelerated design of medical data models by sharing best practice, more standardised data models with semantic annotation and better information exchange between information systems, in particular Electronic Data Capture (EDC) and Electronic Health Records (EHR) systems. Contents of the MDM portal need to be further expanded to reach broad coverage of all relevant medical domains. Database URL: https://medical-data-models.org.
信息系统是医学研究和医疗保健取得成功的关键因素。目前，这些系统大多采用异构的专有数据模型，这阻碍了出于科学目的的数据交换和综合数据分析。由于医学术语的复杂性，医学数据模型的总数非常庞大。目前，这些模型中的绝大多数科学界无法获取。医学数据模型门户（MDM，https://medical-data-models.org）的目标是促进医学数据模型的共享。
MDM是一个注册的欧洲信息基础设施。它为医学研究和医疗保健中的医学数据模型交换和讨论提供了一个多语言平台。该系统是与明斯特大学图书馆合作开发的，以确保可持续性。一个网络前端使用户能够搜索、查看、下载和讨论数据模型。有11种不同的导出格式可供使用（ODM、PDF、CDA、CSV、MACRO-XML、REDCap、SQL、SPSS、ADL、R、XLSX）。对MDM的内容进行了描述性统计分析。
MDM包含4387个数据模型的当前版本（总共10963个版本）。其中2475个模型属于肿瘤学试验。最常见的关键词（n = 3826）是“临床试验”；最常见的疾病是乳腺癌、白血病、肺癌和结肠直肠癌。数据元素最常用的语言是英语（n = 328557）和德语（n = 68738）。108412个数据项、2453个项目组和35361个代码列表项有语义注释（UMLS代码）。总共分配了335087个UMLS代码，其中有21847个唯一代码。很少有UMLS代码被使用数千次，但在频率分布中有一长串很少使用的代码。
MDM门户预期的好处是通过共享最佳实践改进和加速医学数据模型的设计，拥有更多带有语义注释的标准化数据模型，以及改善信息系统之间，特别是电子数据采集（EDC）和电子健康记录（EHR）系统之间的信息交换。MDM门户的内容需要进一步扩展，以全面覆盖所有相关医学领域。数据库网址：https://medical-data-models.org。
