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IntroductionThe potential for secondary use of health data to improve healthcare is currently not fully exploited. Health data is largely kept in isolated data silos and key infrastructure to aggregate these silos into standardized bodies of knowledge is underdeveloped. We describe the development, implementation, and evaluation of a federated infrastructure to facilitate versatile secondary use of health data based on Health Data Space nodes.Materials and methodsOur proposed nodes are self-contained units that digest data through an extract-transform-load framework that pseudonymizes and links data with privacy-preserving record linkage and harmonizes into a common data model (OMOP CDM). To support collaborative analyses a multi-level feature store is also implemented. A feasibility experiment was conducted to test the infrastructures potential for machine learning operations and deployment of other apps (e.g., visualization). Nodes can be operated in a network at different levels of sharing according to the level of trust within the network.ResultsIn a proof-of-concept study, a privacy-preserving registry for heart failure patients has been implemented as a real-world showcase for Health Data Space nodes at the highest trust level, linking multiple data sources including (a) electronical medical records from hospitals, (b) patient data from a telemonitoring system, and (c) data from Austria’s national register of deaths. The registry is deployed at the tirol kliniken, a hospital carrier in the Austrian state of Tyrol, and currently includes 5,004 patients, with over 2.9 million measurements, over 574,000 observations, more than 63,000 clinical free text notes, and in total over 5.2 million data points. Data curation and harmonization processes are executed semi-automatically at each individual node according to data sharing policies to ensure data sovereignty, scalability, and privacy. As a feasibility test, a natural language processing model for classification of clinical notes was deployed and tested.DiscussionThe presented Health Data Space node infrastructure has proven to be practicable in a real-world implementation in a live and productive registry for heart failure. The present work was inspired by the European Health Data Space initiative and its spirit to interconnect health data silos for versatile secondary use of health data.

Background: The recent rise of large language models has triggered renewed interest in medical free text data, which holds critical information about patients and diseases. However, medical free text is also highly sensitive. Therefore, de-identification is typically required but is complicated since medical free text is mostly unstructured. With the Masketeer algorithm, we present an effective tool to de-identify German medical text. Methods: We used an ensemble of different masking classes to remove references to identifiable data from over 35,000 clinical notes in accordance with the HIPAA Safe Harbor Guidelines. To retain additional context for readers, we implemented an entity recognition scheme and corpus-wide pseudonymization. Results: The algorithm performed with a sensitivity of 0.943 and specificity of 0.933. Further performance analyses showed linear runtime complexity (O(n)) with both increasing text length and corpus size. Conclusions: In the future, large language models will likely be able to de-identify medical free text more effectively and thoroughly than handcrafted rules. However, such gold-standard de-identification tools based on large language models are yet to emerge. In the current absence of such, we hope to provide best practices for a robust rule-based algorithm designed with expert domain knowledge.

IntroductionCardiovascular diseases are the leading cause of death worldwide and are partly caused by modifiable risk factors. Cardiac rehabilitation addresses several of these modifiable risk factors, such as physical inactivity and reduced exercise capacity. However, despite its proven short-term merits, long-term adherence to healthy lifestyle changes is disappointing. With regards to exercise training, it has been shown that rehabilitation supplemented by a) home-based exercise training and b) supportive digital tools can improve adherence.MethodsIn our multi-center study (ClincalTrials.gov Identifier: NCT04458727), we analyzed the effect of supportive digital tools like digital diaries and/or wearables such as smart watches, activity trackers, etc. on exercise capacity during cardiac rehabilitation. Patients after completion of phase III out-patient cardiac rehabilitation, which included a 3 to 6-months lasting home-training phase, were recruited in five cardiac rehabilitation centers in Austria. Retrospective rehabilitation data were analyzed, and additional data were generated via patient questionnaires.Results107 patients who did not use supportive tools and 50 patients using supportive tools were recruited. Already prior to phase III rehabilitation, patients with supportive tools showed higher exercise capacity (Pmax = 186 ± 53 W) as compared to patients without supportive tools (142 ± 41 W, p