Portal of medical data models: information infrastructure for medical research and healthcare

Abstract

Introduction: 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.Methods: 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.Results: 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.Discussion: 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

Clinical Research Informatics: Supporting the Research Study Lifecycle

“…One crucial aspect of systems architectures for CRI is the ability to protect confidentiality of participants; articles in this group covered methods for securely sharing data across sites, detecting protected health information and pseudonymization [14][15][16]. Efforts related to data standardization included a comparison of data models, processes for data harmonization, federated data shar-ing, and minimum datasets [17][18][19][20]. These papers addressed a wide range of disease areas, including cancer, lung disease, and rare diseases, as well as Down syndrome, heart disease, and diabetes [21][22][23].…”

Clinical Research Informatics: Supporting the Research Study Lifecycle

“…One crucial aspect of systems architectures for CRI is the ability to protect confidentiality of participants; articles in this group covered methods for securely sharing data across sites, detecting protected health information and pseudonymization [14][15][16]. Efforts related to data standardization included a comparison of data models, processes for data harmonization, federated data sharing, and minimum datasets [17][18][19][20]. These papers addressed a wide range of disease areas, including cancer, lung disease, and rare diseases, as well as Down syndrome, heart disease, and diabetes [21][22][23].…”

Online Information Infrastructure Increases Inter-Rater Reliability of Medical Coders: A Quasi-Experimental Study (Preprint)

“…The Medical-Data-Models (MDM) portal is a web-based large open-access meta-data registry and an established European information infrastructure [20] funded by the German Research Federation. More than 15,000 medical forms with more than 300,000 form items are available, all of them UMLS-coded by medical experts.…”

“…A conceivable success factor of the semi-automatic code suggestion is the underlying annotated text corpus in the MDM-portal having oncology as the major disease entity as form content and not mortality-leading diseases such as cardiovascular diseases [20]. Continuous development of the annotated text corpus is ongoing [34] in many different medical fields and could therefore yield a further increase in IR in the future.…”