Designing a User-Friendly Data Request Management System for a Growing Health Data Network - A Case Study in the AKTIN Registry.

The AKTIN Emergency Department Registry, a German health data network, faces operational challenges due to rapid growth. Manual data request processes have become inefficient, hindering timely research and straining personnel. To address these challenges, we undertook a user-centered analysis utilizing Design Thinking principles to identify pain points and functional requirements in current data request creation and management processes.

Bridging Data Models in Health Care With a Novel Intermediate Query Format for Feasibility Queries: Mixed Methods Study.

Background: To advance research with clinical data, it is essential to make access to the available data as fast and easy as possible for researchers, which is especially challenging for data from different source systems within and across institutions. Over the years, many research repositories and data standards have been created. One of these is the Fast Healthcare Interoperability Resources (FHIR) standard, used by the German Medical Informatics Initiative (MII) to harmonize and standardize data across university hospitals in Germany.

A Pipeline for the Usage of the Core Data Set of the Medical Informatics Initiative for Process Mining - A Technical Case Report.

Introduction: Process Mining (PM) has emerged as a transformative tool in healthcare, facilitating the enhancement of process models and predicting potential anomalies. However, the widespread application of PM in healthcare is hindered by the lack of structured event logs and specific data privacy regulations.

Concept: This paper introduces a pipeline that converts routine healthcare data into PM-compatible event logs, leveraging the newly available permissions under the Health Data Utilization Act to use healthcare data.

Association of Phosphodiesterase-5 Inhibitor Treatment With Improved Survival in Pulmonary Hypertension Associated With COPD in the Pulmonary Vascular Research Institute GoDeep Meta-Registry.

Background: Patients with COPD frequently demonstrate pulmonary hypertension (PH). Severe PH in patients with COPD, identified by pulmonary vascular resistance (PVR) of > 5 Wood units (WU), is closely linked to impaired transplant-free survival. The impact of PH-targeting pharmacotherapy in this context remains unclear.

Data Integration for a Global Deep-Phenotyping Registry for Pulmonary Hypertension - Lessons Learned.

The integration of data from various healthcare centers into disease registries is pivotal for facilitating collaborative research and enhancing clinical insights. In this study, we investigate the integration process of existing registries into the PVRI GoDeep meta-registry, focusing on the complexities and challenges encountered. We detail the integration process, including data transformation, mapping updates, and feedback mechanisms.

Beating the Clock: A Prediction Model for Timely Care in Emergency Departments.

We developed and validated a statistical prediction model using 2.5 electronic health records from 24 German emergency departments (EDs) to estimate treatment timeliness at triage. The model's moderate fit and reliance on interoperable, routine data suggest its potential for implementation in ED crowding management.

The Effects of Displaying the Time Targets of the Manchester Triage System to Emergency Department Personnel: Prospective Crossover Study.

Background: The use of triage systems such as the Manchester Triage System (MTS) is a standard procedure to determine the sequence of treatment in emergency departments (EDs). When using the MTS, time targets for treatment are determined. These are commonly displayed in the ED information system (EDIS) to ED staff.

Modeling Clinical Guidelines for an Epilepsy-CDSS: The EDiTh Project.

The knowledge transformation process involves the guideline for the diagnosis and therapy of epilepsy to an executable and computable knowledge base that serves as the basis for a decision-support system. We present a transparent knowledge representation model which facilitates technical implementation and verification. Knowledge is represented in a plain table, used in the frontend code of the software where simple reasoning is performed.

Local Approval Processes in a Federated and Distributed Research Infrastructure - Lessons Learned from the AKTIN-Project.

The AKTIN-Emergency Department Registry is a federated and distributed health data network which uses a two-step process for local approval of received data queries and result transmission. For currently establishing distributed research infrastructures, we present our lessons learned from 5 years of established operations.

Definition, Composition, and Harmonization of Core Datasets Within the German Center for Lung Research.

Core datasets are the composition of essential data items for a certain research scope. As they state commonalities between heterogeneous data collections, they serve as a basis for cross-site and cross-disease research. Therefore, researchers at the national and international levels have addressed the problem of missing core datasets.

Comparison of the sensitivity of different criteria to select lung cancer patients for screening in a cohort of German patients.

Introduction: Trials of CT-based screening for lung cancer have shown a mortality advantage for screening in North America and Europe. Before introducing a nationwide lung cancer screening program in Germany, it is important to assess the criteria used in international trials in the German population.

Methods: We used data from 3623 lung cancer patients from the data warehouse of the German Center for Lung Research (DZL).

Pulmonary Vascular Research Institute GoDeep: A meta-registry merging deep phenotyping datafrom international PH reference centers.

The Pulmonary Vascular Research Institute GoDeep meta-registry is a collaboration of pulmonary hypertension (PH) reference centers across the globe. Merging worldwide PH data in a central meta-registry to allow advanced analysis of the heterogeneity of PH and its groups/subgroups on a worldwide geographical, ethnical, and etiological landscape (ClinTrial. gov NCT05329714).

A Federated and Distributed Data Management Infrastructure to Enable Public Health Surveillance from Intensive Care Unit Data.

The Robert Koch Institute (RKI) monitors the actual number of COVID-19 patients requiring intensive care from aggregated data reported by hospitals in Germany. So far, there is no infrastructure to make use of individual patient-level data from intensive care units for public health surveillance. Adopting concepts and components of the already established AKTIN Emergency Department Data registry, we implemented the prototype of a federated and distributed research infrastructure giving the RKI access to patient-level intensive care data.

Establishing a Data Quality Baseline in the AKTIN Emergency Department Data Registry - A Secondary Use Perspective.

Secondary use of clinical data is an increasing application that is affected by the data quality (DQ) of its source systems. Techniques such as audits and risk-based monitoring for controlling DQ often rely on source data verification (SDV). SDV requires access to data generating systems.

The Architecture of a Feasibility Query Portal for Distributed COVID-19 Fast Healthcare Interoperability Resources (FHIR) Patient Data Repositories: Design and Implementation Study.

Background: An essential step in any medical research project after identifying the research question is to determine if there are sufficient patients available for a study and where to find them. Pursuing digital feasibility queries on available patient data registries has proven to be an excellent way of reusing existing real-world data sources. To support multicentric research, these feasibility queries should be designed and implemented to run across multiple sites and securely access local data.

Generation of a Fast Healthcare Interoperability Resources (FHIR)-based Ontology for Federated Feasibility Queries in the Context of COVID-19: Feasibility Study.

Background: The COVID-19 pandemic highlighted the importance of making research data from all German hospitals available to scientists to respond to current and future pandemics promptly. The heterogeneous data originating from proprietary systems at hospitals' sites must be harmonized and accessible. The German Corona Consensus Dataset (GECCO) specifies how data for COVID-19 patients will be standardized in Fast Healthcare Interoperability Resources (FHIR) profiles across German hospitals.

Understanding the Nature of Metadata: Systematic Review.

Background: Metadata are created to describe the corresponding data in a detailed and unambiguous way and is used for various applications in different research areas, for example, data identification and classification. However, a clear definition of metadata is crucial for further use. Unfortunately, extensive experience with the processing and management of metadata has shown that the term "metadata" and its use is not always unambiguous.

The Collaborative Metadata Repository (CoMetaR) Web App: Quantitative and Qualitative Usability Evaluation.

Background: In the field of medicine and medical informatics, the importance of comprehensive metadata has long been recognized, and the composition of metadata has become its own field of profession and research. To ensure sustainable and meaningful metadata are maintained, standards and guidelines such as the FAIR (Findability, Accessibility, Interoperability, Reusability) principles have been published. The compilation and maintenance of metadata is performed by field experts supported by metadata management apps.

Accessing OMOP Common Data Model Repositories with the i2b2 Webclient - Algorithm for Automatic Query Translation.

In the era of translational research, data integration and clinical data warehouses are important enabling technologies for clinical researchers. The OMOP common data model is a wide-spread choice as a target for data integration in medical informatics. It's portability of queries and analyses across different institutions and data are ideal also from the viewpoint of the FAIR principles.

ISO 21526 Conform Metadata Editor for FAIR Unicode SKOS Thesauri.

Metadata repositories are an indispensable component of data integration infrastructures and support semantic interoperability between knowledge organization systems. Standards for metadata representation like the ISO/IEC 11179 as well as the Resource Description Framework (RDF) and the Simple Knowledge Organization System (SKOS) by the World Wide Web Consortium were published to ensure metadata interoperability, maintainability and sustainability. The FAIR guidelines were composed to explicate those aspects in four principles divided in fifteen sub-principles.

HIStream-Import: A Generic ETL Framework for Processing Arbitrary Patient Data Collections or Hospital Information Systems into HL7 FHIR Bundles.

Data integration is a necessary and important step to perform translational research and improve the sample size beyond single data collections. For health information, the most recent established communication standards is HL7 FHIR. To bridge the concepts of "minimal invasive" data integration and open standards, we propose a generic ETL framework to process arbitrary patient related data collections into HL7 FHIR - which in turn can then be used for loading into target data warehouses.

Cooperative approach of pathology and neuropathology in the COVID-19 pandemic : German registry for COVID-19 autopsies (DeRegCOVID) and German network for autopsies in pandemics (DEFEAT PANDEMIcs).

Background: Autopsy is an important tool for understanding the pathogenesis of diseases, including COVID-19.

Material And Methods: On 15 April 2020, together with the German Society of Pathology and the Federal Association of German Pathologists, the German Registry of COVID-19 Autopsies (DeRegCOVID) was launched ( www.DeRegCOVID.