Search

The PROSurvival project aims to improve the prediction of recurrence-free survival in prostate cancer by applying federated machine learning to whole slide images combined with selected clinical data. Both the image and clinical data will be aggregated into an anonymized dataset compliant with the General Data Protection Regulation and published under the principles of findable, accessible, interoperable, and reusable data. The DICOM standard will be used for the image data. For the accompanying clinical data, a human-readable, compact and flexible standard is yet to be defined. From the set of existing standards, mostly extendable with varying degrees of modifications, we chose oBDS as a starting point and modified it to include missing data points and to remove mandatory items not applicable to our dataset. Clinical and survival data from clinic-specific spreadsheets were converted into this modified standard, ensuring on-site data privacy during processing. For publication of the dataset, both image and clinical data are anonymized using established methods. The key challenges arose during the clinical data anonymization and in identifying research repositories meeting all of our requirements. Each clinic had to coordinate the publication with their responsible data protection officers, requiring different approval processes due to the individual states' differing interpretations of the legal regulations. The newly established German Health Data Utilization Act is expected to simplify future data sharing in a responsible and powerful way.

Copyright of Zeitschrift für Pädagogik is the property of Julius Beltz GmbH & Co. KG Beltz Juventa and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Objective: The article tackles various issues arising in the context of the process of digitalization in the health sector. The communication and availability of health data, health registers, the electronic health record, consent procedures for the transfer of data and access to health data for research are considered., Methods: The study is based on a computer-assisted telephone survey (dual-frame) of a random sample of adult people living in Germany. Data was collected in the period between June 01 and June 27, 2022 (n = 1,308)., Results: The level of knowledge concerning the transmission of health data to health insurers is good, whereas the existence of central death-, vaccination- and health registers as well as the access to health data by treating physicians is overestimated. The general acceptance of medical registers is very high. Half the population is unfamiliar with the electronic health record, and the willingness to use it is rather low. An opt-in procedure is preferred when transferring data, and more than eighty percent would release data in their electronic health file for research purposes. Three quarters would consent that their health data be handed over to general research, especially if reserach facilities were situated at German universities, under the condition that their data be treated confidentiallly. The willingness to release data correlates with the level of trust in the press as well as in universities and colleges and decreases when a data leak is considered to be serious., Discussion and Conclusion: In Germany, as in other European countries, we observe a great willingness of people to release health data for research purposes. However, the propensity to use the electronic health file is comparatively low, as is the acceptance of an opt-out procedure, which in the literature is considered a prerequisite for the successful implementation of electronic health records in other countries. Unsurprisingly, a general trust in research and government agencies that process health data is a key factor., (Copyright © 2023. Published by Elsevier GmbH.)

Ausgehend von den aktuellen Entwicklungen in Deutschland und Europa werden Diskussionen, Initiativen und Projektergebnisse im Bereich des digitalen Datenmanagements vorgestellt. Dabei wird ein besonderer Bezug zu den wissenschaftlichen Bibliotheken und deren zukünftige Aufgabenfelder gelegt, die international mit „Data Literacy" und „Data Stewardship" beschrieben werden. In Ergänzung zu „Data Scientists" werden in Zukunft in großer Zahl Experten für das digitale Datenmanagement (sogenannte „Data Stewards") benötigt. Daher haben das Institut für Bibliotheks- und Informationswissenschaft der Humboldt-Universität zu Berlin und der Fachbereich Informationswissenschaften der Fachhochschule Potsdam gemeinsam den weiterbildenden Masterstudiengang Digitales Datenmanagement konzipiert, der im April 2019 startete. Wie sich dieser Studiengang in die nationalen und internationalen Entwicklungen und Herausforderungen einfügt, ist Gegenstand dieses Artikels. This article provides an overview over discussions, initiatives, and projects in the field of digital data management while taking currents trends and developments in Germany and Europe into consideration. The main foci of the article are new task areas in research libraries, which are internationally recognized by the terms data literacy and data stewardship. In addition to data scientists, a large number of experts for the management of digital data (so-called data stewards) will be needed in the future. This is why the Berlin School for Library and Information Science at Humboldt-Universität zu Berlin and the Faculty for Information Sciences at the University of Applied Sciences Potsdam have collaborated in designing a new executive Master program Digital Data Management, which started in April 2019. This article elaborates how the Master program is connected to national and international developments and challenges. [ABSTRACT FROM AUTHOR]

The vast and heterogeneous data being constantly generated in clinics can provide great wealth for patients and research alike. The quickly evolving field of medical informatics research has contributed numerous concepts, algorithms, and standards to facilitate this development. However, these difficult relationships, complex terminologies, and multiple implementations can present obstacles for people who want to get active in the field. With a particular focus on medical informatics research conducted in Germany, we present in our Viewpoint a set of 10 important topics to improve the overall interdisciplinary communication between different stakeholders (eg, physicians, computational experts, experimentalists, students, patient representatives). This may lower the barriers to entry and offer a starting point for collaborations at different levels. The suggested topics are briefly introduced, then general best practice guidance is given, and further resources for in-depth reading or hands-on tutorials are recommended. In addition, the topics are set to cover current aspects and open research gaps of the medical informatics domain, including data regulations and concepts; data harmonization and processing; and data evaluation, visualization, and dissemination. In addition, we give an example on how these topics can be integrated in a medical informatics curriculum for higher education. By recognizing these topics, readers will be able to (1) set clinical and research data into the context of medical informatics, understanding what is possible to achieve with data or how data should be handled in terms of data privacy and storage; (2) distinguish current interoperability standards and obtain first insights into the processes leading to effective data transfer and analysis; and (3) value the use of newly developed technical approaches to utilize the full potential of clinical data., (©Markus Wolfien, Najia Ahmadi, Kai Fitzer, Sophia Grummt, Kilian-Ludwig Heine, Ian-C Jung, Dagmar Krefting, Andreas Kühn, Yuan Peng, Ines Reinecke, Julia Scheel, Tobias Schmidt, Paul Schmücker, Christina Schüttler, Dagmar Waltemath, Michele Zoch, Martin Sedlmayr. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 24.07.2023.)

As part of the e-science strategy of Baden-Wuerttemberg a comprehensive survey on the topic of research data management amongst researchers from the state's nine universities was conducted in 2014/15. The results indicate that the issue is highly relevant as research communities need conceptional, technological, and consultative support from infrastructural facilities in their handling of data. [ABSTRACT FROM AUTHOR]