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The increasingly digitized healthcare system requires new skills from all those involved. In order to impart these competencies, appropriate courses must be developed at educational institutions. In view of the rapid development of new aspects of digitization, this presents a challenge; suitable teaching formats must be developed successively. The establishment of cross-location teaching networks is one way to better meet training needs and to make the necessary spectrum of educational content available. As part of the Medical Informatics Initiative, the HiGHmed consortium is establishing such a teaching network, in the field of medical informatics, which covers many topics related to the digitization of the health care system. Various problem areas in the German education system were identified that hinder the development of the teaching network. These problem areas were prioritized firstly according to the urgency of the solution from the point of view of the HiGHmed consortium and secondly according to existing competencies in the participating societies. A workshop on the four most relevant topics was organized with experts from the German Society for Medical Informatics, Biometry and Epidemiology (GMDS), the Society for Medical Education (GMA) and the HiGHmed consortium. These are:For all subject areas, existing preliminary work was identified on the basis of working questions, and short- and long-term needs for action were formulated. Finally, a need for the redesign of a technologically supported syntactic and semantic interoperability of learning performance recording was identified.

Background: Improper information transmission can lead to compromised patient safety and quality of life when patients are transferred from one setting to another. Electronic instruments may improve this situation, however, they are rarely used. Objective: The aim of this study therefore was to investigate the technical and organizational feasibility, usability, usefulness and completeness of an electronic instrument that is based on the German HL7 CDA standard for eNursing Summaries.Materials and methods: To this end, a test health telematics infrastructure, which included the German electronic health card, was established and nursing summary application was developed that allowed summary documents to be communicated between a hospital and a nursing home. The users were asked to evaluate the usability of the nursing summary application as well as to compare the usefulness and completeness of electronically and paper transmitted information.Results: This study demonstrated the feasibility of implementing an electronic nursing summary application that was based on the German HL7 CDA standard eNursing Summary and that was integrated in a test health telematics infrastructure. It could also be shown that the users rated this application as usable and that electronically supported patient transfers were superior to paper based ones. The use of the German electronic health card was regarded as a barrier by the users.Discussion: This study emphasizes the feasibility, relevance and barriers of electronically supported transfers of patients with nursing needs. Nurses working in hospitals and long-term care can integrate an application based on the HL7 CDA Standard ePfgebericht into their working processes and get better and more complete information. To ensure continuity of care in a sustainable manner in the future, the German HL7 CDA based eNursing Summary standard should become part of the German telematics infrastructure.

Background: Multiple sclerosis (MS) is a neuroinflammatory and neurodegenerative disease. Over time, symptoms accumulate leading to increased disability of patients. Objective: The objective of this article is to analyze the prevalence of symptoms and symptomatic treatment patterns in a nationwide MS registry. Methods: Data sets from 35,755 patients were analyzed. Results: More than two-thirds of patients were women with a mean age of 46.1 (±12.8) years. Median Expanded Disability Status Score (EDSS) was 3.0. The most frequently reported symptoms were fatigue, spasticity, and voiding disorders. In patients with short disease duration, fatigue was reported most frequently. Symptomatic treatment was most common for spasticity and depression, whereas fatigue was treated only in a third of affected patients. Almost a fifth of patients with EDSS ⩽ 3.5 and neuropsychological symptoms had retired from work. Conclusion: Whereas treatment for spasticity and depression is common in our cohort, sexual dysfunction, dysphagia, cognitive dysfunction, and fatigue are treated to a far lesser extent. The need for psychological support, physical, and occupational therapy has to be recognized as neuropsychological symptoms have a great impact on retirement at an early stage. Overall symptomatic treatment rates for the most common symptoms have increased over the last years (p < 0.001). [ABSTRACT FROM AUTHOR]

In University Medical Centers, heterogeneous data are generated that cannot always be clearly attributed to patient care or biomedical research. Each data set has to adhere to distinct intrinsic and operational quality standards. However, only if high-quality data, tools to work with the data, and most importantly guidelines and rules of how to work with the data are addressed adequately, an infrastructure can be sustainable. Here, we present the IT Research Architecture of the University Medical Center Göttingen and describe our ten years` experience and lessons learned with infrastructures in networked medical research. [ABSTRACT FROM AUTHOR]

Background: The recently proposed latent variable δ is a new tool for dementia case finding. It is built in a structural equation modeling framework of cognitive and functional data and constitutes a novel endophenotype for Alzheimer's disease (AD) research and clinical trials.Objective: To investigate the association of δ with AD biomarkers and to compare the prediction of δ with established scales for conversion to dementia in patients with mild cognitive impairment (MCI).Methods: Using data from a multicenter memory clinic study, we examined the external associations of the latent variable δ and compared δ with well-established cognitive and functional scales and cognitive-functional composite scores. For that purpose, logistic regressions with cerebrospinal fluid (CSF) biomarkers and conversion to dementia as dependent variables were performed with the investigated scores. The models were tested for significant differences.Results: In patients with MCI, δ based on a broad range of cognitive scales (including the ADAS-cog, the MMSE, and the CERAD neuropsychological battery) predicted an abnormal CSF Aβ42/tau ratio indicative of AD (n = 340, AUC = 0.78, p <  0.001), and predicted incident dementia within 1-3 years of follow-up (n = 525, AUC = 0.84, p <  0.001). These associations were generally stronger than for any other scale or cognitive-functional composite examined. Homologs of δ based on reduced test batteries yielded somewhat lower effects.Conclusion: These findings support the interpretation of δ as a construct capturing the disease-related "essence" of cognitive and functional impairments in patients with MCI and dementia, and suggest that δ might become an analytical tool for dementia research. [ABSTRACT FROM AUTHOR]

Objectives It is difficult to obtain longitudinal 'real world' data from ambulatory medical care in Germany in a systematic way. Our vision is a large German research data repository featuring representative, anonymized patient and outpatient health care data, longitudinal, continuously updated and across different providers, offering a perspective of linking secondary care data or additional data obtained from research cohorts, for example patient reported data or biodata, and will be accessible for other researchers. Here we report specific methods and results from the RADAR project.Methods Survey of legislation, design of technical processes and organisational solutions, with a feasibility study to evaluate technical and content functionality, acceptability and performance fitness for health services research questions.Results In 2016, a multi-disciplinary scientific team initiated the development of a privacy protection and IT security concept for data exported from the electronic medical records (EMR) of physicians' practices in line with the European General Data Protection Regulation. Technical and organisational requirements for lawful research infrastructure were developed and executed for use in a specific case, namely ̒oral anticoagulation'. In 7 Lower Saxonian general practices, 100 patients were selected by their physician and their data - reduced to 40 essential data fields - extracted from EMR via a mandatory software interface after informed consent. Still in the practice, the data were split into identifying or medical data. These were encrypted and transferred either to a trusted third party (TTP) or to a data repository, respectively. 75 patients who met our inclusion criteria (minimum of one year of oral anticoagulation treatment) received a quality-of-life questionnaire via the TTP. Of the 66 returns, 63 responses were then linked to the EMR data in the repository.Conclusion Results from RADAR project proved the technical and organisational feasibility of lawful, pseudonymised data acquisition and the linkage of questionnaires to EMR data. The protecting concepts privacy by design and data minimization (Art. 25 GDPR with Recital 78) were implemented. Without informed consent, secondary use of routine data from ambulatory care which are sufficiently anonymized but still meaningful is all but impossible under current German law., Competing Interests: Die Autoren erklären, dass keine Interessenkonflikte bestehen., (Georg Thieme Verlag Rüdigerstraße 14, 70469 Stuttgart, Germany.)

Competing Interests: PF erhielt Honorare für Referenten- und Beratungstätigkeiten von den Firmen Almirall, Bayer, Biogen, Genzyme, Novartis, Merck, Roche, Sanofi und Teva, alle außerhalb der vorliegenden Arbeit. KE, DE, OR und AS geben keine Interessenkonflikte an. KB erhielt institutionelle Forschungszuschüsse vom Krankheitsbezogenen Kompetzenznetz Multiple Sklerose (KKN-MS), dem Bundesministerium für Bildung und Forschung (BMBF), der Deutschen Restless-legs Gesellschaft und den Firmen Biogen, Boehringer Ingelheim, Mundipharma, Neurobiotec, Roche, UCB und Vifor, alle außerhalb der vorliegenden Arbeit. TF erhielt Honorare für Beratungstätigkeiten (inkl. DMCs) von den Firmen AstraZeneca, Bayer, Biosense Webster, Boehringer Ingelheim, CSL Behring, DaiichiSankyo, Enanta, Patentanwaltskanzlei Feldmann, Fresenius Kabi, Galapagos, IQVIA, Janssen, Mediconomics, Novartis, Penumbra, Parexel, Pharmalog, Roche, alle außerhalb der vorliegenden Arbeit. JH erhielt Aufwandsentschädigungen von den Firmen Almirall, Allergan, Biogen, Bayer, HOFFMANN La Roche, Merck, Novartis, Octapharma und Teva, alle außerhalb der vorliegenden Arbeit. CK erhielt Honorare für Referenten- und Beratungstätigkeiten von den Firmen Biogen, Merck Serono, Bayer, Teva, Novartis, Medday, Mylan, Genzyme, Almirall und Roche, alle außerhalb der vorliegenden Arbeit. DP erhielt institutionelle Forschungszuschüsse und Honorare für Referententätigkeit von den Firmen Almirall, Biogen Idec, Bayer, Genzyme, Merck Serono, Novartis, Sanofi und TEVA; alle außerhalb der vorliegenden Arbeit. UKZ erhielt institutionelle Forschungszuschüsse und Honorare für Referententätigkeit von den Firmen Almirall, Biogen Idec, Bayer, Merck Serono, Novartis, Roche, Sanofi und TEVA; alle außerhalb der vorliegenden Arbeit.

Background: Multiple sclerosis (MS) is a neuroinflammatory and neurodegenerative disease. Over time, symptoms accumulate leading to increased disability of patients., Objective: The objective of this article is to analyze the prevalence of symptoms and symptomatic treatment patterns in a nationwide MS registry., Methods: Data sets from 35,755 patients were analyzed., Results: More than two-thirds of patients were women with a mean age of 46.1 (±12.8) years. Median Expanded Disability Status Score (EDSS) was 3.0. The most frequently reported symptoms were fatigue, spasticity, and voiding disorders. In patients with short disease duration, fatigue was reported most frequently. Symptomatic treatment was most common for spasticity and depression, whereas fatigue was treated only in a third of affected patients. Almost a fifth of patients with EDSS ⩽ 3.5 and neuropsychological symptoms had retired from work., Conclusion: Whereas treatment for spasticity and depression is common in our cohort, sexual dysfunction, dysphagia, cognitive dysfunction, and fatigue are treated to a far lesser extent. The need for psychological support, physical, and occupational therapy has to be recognized as neuropsychological symptoms have a great impact on retirement at an early stage. Overall symptomatic treatment rates for the most common symptoms have increased over the last years ( p  < 0.001).

Although national eHealth strategies have existed now for more than a decade in many countries, they have been implemented with varying success. In Germany, the eHealth strategy so far has resulted in a roll out of electronic health cards for all citizens in the statutory health insurance, but in no clinically meaningful IT-applications. The aim of this study was to test the technical and organisation feasibility, usability, and utility of an eDischarge application embedded into a laboratory Health Telematics Infrastructure (TI). The tests embraced the exchange of eDischarge summaries based on the multiprofessional HL7 eNursing Summary standard between a municipal hospital and a nursing home. All in all, 36 transmissions of electronic discharge documents took place. They demonstrated the technical-organisation feasibility and resulted in moderate usability ratings. A comparison between eDischarge and paper-based summaries hinted at higher ratings of utility and information completeness for eDischarges. Despite problems with handling the electronic health card, the proof-of-concept for the first clinically meaningful IT-application in the German Health TI could be regarded as successful.