Digital health applications in the self-management of epilepsy-A survey on patients' perspective.

OBJECTIVE: Digital health applications can be prescribed since 2019 in Germany, which is likely to facilitate a broad use of epilepsy self-management applications, possibly directly connected to clinical systems via telematics infrastructures. This article reports on patients' interest in digital support for epilepsy self-management, influencing factors and patients' knowledge about digitization of health care in Germany. METHODS: This work is based on self-reported data from 115 people with epilepsy participating in an anonymous online survey with a total of 54 questions covering several topics, including sociodemographics and epilepsy manifestation, use of technology in general and for treatment support, training programs, affinity for technology, knowledge on the digital infrastructure in Germany, and self-efficacy in dealing with chronic illness. The self-constructed questionnaire uses existing instruments like TA-EG, SES6G, and Hoffmeyer-Zlotnik sociodemographic questionnaire. To analyze the knowledge about digitalization in health care, a combination of self-assessment and knowledge quiz was used. The analysis was performed using descriptive methods and inferential statistics (t-test, reliability analysis, and correlations). RESULTS: Participants were most interested in seizure alerting and documentation with the possibility to share documentation with physicians. The analysis of technology affinity showed medium enthusiasm, with positively perceived consequences being rated higher than the negatively perceived consequences of technology use. Knowledge on national health infrastructures was mediocre and training on this was judged to be essential and desired. Furthermore, a significant correlation was found between interest in use and affinity for technology (enthusiasm for technology [r = 0.29; P = 0.00]) and positively perceived consequences of technology (r = 0.33; P = 0.00). SIGNIFICANCE: Our results underline the high relevance of digital solutions for patients and the importance of individual training opportunities in digital health literacy, thereby enabling patients to decide competently for or against offered digital solutions.

Concept and Implementation of Data Usage Proposal Process Based on International Standards in SMITH.

Accessing secondary-use healthcare data in Germany requires contracting with each organization that acts as a data provider. The SMITH Service Platform offers a central access point for scientists, facilitating contracting as part of an integrated data use and access process with several Data Integration Centers (DIC) at once. Process support is realized by a central Business Process Engine (BPE), which manages process definition and process control, combined with a central IHE infrastructure. The use of IHE XDS and IHE XDW profiles enables the exchange of process instance information with multiple distributed visualization and user interaction tools for provided user tasks based on international standards. User task information include structured forms for submitting instructions and results as task input and output for the users, and are synchronized between the shared process instance and the BPE. A reference user interface is also provided with the SMITH Marketplace. In the future, further standardization efforts regarding the structured forms and the use of the IHE XDW profile should be pursued.