Evaluating and Enhancing the Fitness-for-Purpose of Electronic Health Record Data: Qualitative Study on Current Practices and Pathway to an Automated Approach Within the Medical Informatics for Research and Care in University Medicine Consortium.

Background: Leveraging electronic health record (EHR) data for clinical or research purposes heavily depends on data fitness. However, there is a lack of standardized frameworks to evaluate EHR data suitability, leading to inconsistent quality in data use projects (DUPs). This research focuses on the Medical Informatics for Research and Care in University Medicine (MIRACUM) Data Integration Centers (DICs) and examines empirical practices on assessing and automating the fitness-for-purpose of clinical data in German DIC settings.

Alpha-1-antitrypsin-deficiency is associated with lower cardiovascular risk: an approach based on federated learning.

Background: Chronic obstructive pulmonary disease (COPD) is an inflammatory multisystemic disease caused by environmental exposures and/or genetic factors. Inherited alpha-1-antitrypsin deficiency (AATD) is one of the best recognized genetic factors increasing the risk for an early onset COPD with emphysema. The aim of this study was to gain a better understanding of the associations between comorbidities and specific biomarkers in COPD patients with and without AATD to enable future investigations aimed, for example, at identifying risk factors or improving care.

DQAgui: a graphical user interface for the MIRACUM data quality assessment tool.

Background: With the growing impact of observational research studies, there is also a growing focus on data quality (DQ). As opposed to experimental study designs, observational research studies are performed using data mostly collected in a non-research context (secondary use). Depending on the number of data elements to be analyzed, DQ reports of data stored within research networks can grow very large.

Shift of radiotherapy use during the first wave of the COVID-19 pandemic? An analysis of German inpatient data.

Objective: To assess the change in inpatient radiotherapy related to COVID-19 lockdown measures during the first wave of the pandemic in 2020.

Methods: We included cases hospitalized between January 1 and August 31, 2018-2020, with a primary ICD-10 diagnosis of C00-C13, C32 (head and neck cancer, HNC) and C53 (cervical cancer, CC). Data collection was conducted within the Medical Informatics Initiative.

Linking a Consortium-Wide Data Quality Assessment Tool with the MIRACUM Metadata Repository.

Background: Many research initiatives aim at using data from electronic health records (EHRs) in observational studies. Participating sites of the German Medical Informatics Initiative (MII) established data integration centers to integrate EHR data within research data repositories to support local and federated analyses. To address concerns regarding possible data quality (DQ) issues of hospital routine data compared with data specifically collected for scientific purposes, we have previously presented a data quality assessment (DQA) tool providing a standardized approach to assess DQ of the research data repositories at the MIRACUM consortium's partner sites.

A Multi-User Terminology Mapping Toolbox.

Semantic interoperability is a major challenge in multi-center data sharing projects, a challenge that the German Initiative for Medical Informatics is taking up. With respect to laboratory data, enriching site-specific tests and measurements with LOINC codes appears to be a crucial step in supporting cross-institutional research. However, this effort is very time-consuming, as it requires expert knowledge of local site specifics.

Reduced Rate of Inpatient Hospital Admissions in 18 German University Hospitals During the COVID-19 Lockdown.

The COVID-19 pandemic has caused strains on health systems worldwide disrupting routine hospital services for all non-COVID patients. Within this retrospective study, we analyzed inpatient hospital admissions across 18 German university hospitals during the 2020 lockdown period compared to 2018. Patients admitted to hospital between January 1 and May 31, 2020 and the corresponding periods in 2018 and 2019 were included in this study.

Moving Towards an EHR Data Quality Framework: The MIRACUM Approach.

Introduction: Data quality (DQ) is an important prerequisite for secondary use of electronic health record (EHR) data in clinical research, particularly with regards to progressing towards a learning health system, one of the MIRACUM consortium's goals. Following the successful integration of the i2b2 research data repository in MIRACUM, we present a standardized and generic DQ framework.

State Of The Art: Already established DQ evaluation methods do not cover all of MIRACUM's requirements.

Towards Structured Data Quality Assessment in the German Medical Informatics Initiative: Initial Approach in the MII Demonstrator Study.

The Demonstrator study aims to analyse comorbidities and rare diseases among patients from German university hospitals within the German Medical Informatics Initiative. This work aimed to design and determine the feasibility of a model to assess the quality of the claims data used in the study. Several data quality issues were identified affecting small amounts of cases in one of the participating sites.

The German Chronic Kidney Disease (GCKD) study: design and methods.

Background: Chronic kidney disease (CKD) is increasingly recognized as a global health problem. The conditions leading to CKD, the health impact of CKD and the prognosis differ markedly between affected individuals. In particular, renal failure and cardiovascular mortality are competing risks for CKD patients.

Early and differential diagnosis of dementia and mild cognitive impairment: design and cohort baseline characteristics of the German Dementia Competence Network.

Background: The German Dementia Competence Network (DCN) has established procedures for standardized multicenter acquisition of clinical, biological and imaging data, for centralized data management, and for the evaluation of new treatments.

Methods: A longitudinal cohort study was set up for patients with mild cognitive impairment (MCI), patients with mild dementia and control subjects. The aims were to establish the diagnostic, differential diagnostic and prognostic power of a range of clinical, laboratory and imaging methods.