[The way to routine data from 16 emergency departments for cross-sectoral health services research : Experiences, challenges and solution approaches from the extraction of pseudonymous data for the INDEED project]. / Der Weg zu Routinedaten aus 16 Notaufnahmen für die sektorenübergreifende Versorgungsforschung : Erfahrungen, Herausforderungen und Lösungsansätze aus der Extraktion pseudonymer Daten für das Projekt INDEED.

BACKGROUND: In Germany there is currently no health reporting on cross-sectoral care patterns in the context of an emergency department care treatment. The INDEED project (Utilization and trans-sectoral patterns of care for patients admitted to emergency departments in Germany) collects routine data from 16 emergency departments, which are later merged with outpatient billing data from 2014 to 2017 on an individual level. AIM: The methodological challenges in planning of the internal merging of routine clinical and administrative data from emergency departments in Germany up to the final data extraction are presented together with possible solution approaches. METHODS: Data were selected in an iterative process according to the research questions, medical relevance, and assumed data availability. After a preparatory phase to clarify formalities (including data protection, ethics), review test data and correct if necessary, the encrypted and pseudonymous data extraction was performed. RESULTS: Data from the 16 cooperating emergency departments came mostly from the emergency department and hospital information systems. There was considerable heterogeneity in the data. Not all variables were available in every emergency department because, for example, they were not standardized and digitally available or the extraction effort was judged to be too high. CONCLUSION: Relevant data from emergency departments are stored in different structures and in several IT systems. Thus, the creation of a harmonized data set requires considerable resources on the part of the hospital as well as the data processing unit. This needs to be generously calculated for future projects.

INDEED-Utilization and Cross-Sectoral Patterns of Care for Patients Admitted to Emergency Departments in Germany: Rationale and Study Design.

Introduction: The crowding of emergency departments (ED) has been a growing problem for years, putting the care of critically ill patients increasingly at risk. The INDEED project's overall aim is to get a better understanding of ED utilization and to evaluate corresponding primary health care use patterns before and after an ED visit while driving forward processes and methods of cross-sectoral data merging. We aim to identify adequate utilization of EDs and potentially avoidable patient contacts as well as subgroups and clusters of patients with similar care profiles. Methods: INDEED is a joint endeavor bringing together research institutions and hospitals with EDs in Germany. It is headed by the Charité-Universitätsmedizin Berlin, collaborating with Otto von Guericke University Magdeburg, Technische Universität Berlin, the Central Research Institute of Ambulatory/Outpatient Health Care in Germany (Zi), and the AOK Research Institute as part of the Federal Association of AOK, as well as experts in the technological, legal, and regulatory aspects of medical research (TMF). The Institute for Information Technology (OFFIS) was involved as the trusted third party of the project. INDEED is a retrospective study of approximately 400,000 adult patients with statutory health insurance who visited the ED of one of 16 participating hospitals in 2016. The routine hospital data contain information about treatment in the ED and, if applicable, about the subsequent hospital stay. After merging the patients' hospital data from 2016 with their outpatient billing data from 2 years before to 1 year after the ED visit (years 2014-2017), a harmonized dataset will be generated for data analyses. Due to the complex data protection challenges involved, first results will be available in 2021. Discussion: INDEED will provide knowledge on extracting and harmonizing large scale data from varying routine ED and hospital information systems in Germany. Merging these data with the corresponding outpatient care data of patients offers the opportunity to characterize the patient's treatment in outpatient care before and after ED use. With this knowledge, appropriate interventions may be developed to ensure adequate patient care and to avoid adverse events such as ED crowding.

Generation of Fine Grained Demographic Information for Epidemiological Analysis.

Cancer risks may be influenced by local exposures such as working conditions or nuclear waste repositories. To find influences, local accumulations of cancer rates are used, for which finely granulated data should be utilized. In particular, high-resolution demographic data for a reference population are important, but often not available for data protection reasons. Therefore, estimation methods are necessary to approximate small-scale demographic data as accurately as possible. This paper presents an approach to project existing epidemiological and public data to a common granularity with respect to attribute characteristics such as place of residence, age or smoking status to allow for analyses such as local accumulations and consistently falls below an average relative error of 5%.

Practical Implementation of Receiver-Oriented Encryption in STROKE OWL.

New forms of care for complex chronic diseases require substantial efforts in the collection, storage, and analysis of privacy sensible medical data. Additionally, providing practical support for those who coordinate the actual care management process within a diversified network of regional service providers is beneficial. In this paper, we present a follow-up with the current status, lessons learned, and preliminary results of the IT infrastructure in project STROKE OWL. The project aims at a comprehensive implementation of cross-sector care management for stroke patients. Patients are accompanied in their recovery by stroke pilots, who use a specially designed tablet app for the piloting. It is shown how the tablet app uses receiver-oriented encryption to support the piloting process while ensuring privacy.

Privacy by Design for Integrated Case and Care Management: Receiver-Oriented Encryption in STROKE OWL.

Research into new forms of care for complex chronic diseases requires substantial efforts in the collection, storage, and analysis of medical data. Additionally, providing practical support for those who coordinate the actual care management process within a diversified network of regional service providers is also necessary. For instance, for stroke units, rehabilitation partners, ambulatory actors, as well as health insurance funds. In this paper, we propose the concept of comprehensive and practical receiver-oriented encryption (ROE) as a guiding principle for such data-intensive, research-oriented case management systems, and illustrate our concept with the example of the IT infrastructure of the project STROKE OWL.

Enhancing Safety of Artificially Ventilated Patients Using Ambient Process Analysis.

In this paper, we present an approach for enhancing the safety of artificially ventilated patients using ambient process analysis. We propose to use an analysis system consisting of low-cost ambient sensors such as power sensor, RGB-D sensor, passage detector, and matrix infrared temperature sensor to reduce risks for artificially ventilated patients in both home and clinical environments. We describe the system concept and our implementation and show how the system can contribute to patient safety.

Guideline-driven telemonitoring and follow-up of cardiovascular implantable electronic devices using IEEE 11073, HL7 & IHE profiles.

For patients with Cardiovascular Implantable Electronic Devices (CIEDs), telemonitoring promises improved quality of life and safety, since events recorded by the device or observed by the patient can alert a health professional. Taking into account the latest clinical guidelines when responding to such alerts, is a topic of active research addressed by the iCARDEA project. A key technical challenge is correlating telemonitoring CIED report data in a vendor-independent format with Electronic Health Record (EHR) data collected in the hospital and Personal Health Record (PHR) data entered by the patient, in guideline-driven care processes. The iCARDEA CIED exposure service component presented in this paper employs standards specifications from ISO/IEEE 11073 (Health Informatics, Point-of-care Medical Device Communication) and HL7v2.x in the context of Integrating the Healthcare Enterprise (IHE) profiles to deliver telemonitoring CIED report data from two different CIED vendors to the adaptive care planner that implements guideline-driven care plans. Experience gained with implementation and initial component testing is discussed, while challenges and expectations for future health information standards to effectively support EHR-integrated guide-line-driven telemonitoring services are highlighted.