TrustNShare: Development of a Blockchain-Based Data Trust Model for Secure and Controlled Health Data Sharing Grounded on Empirical Research.

Ensuring data quality and protecting data are key requirements when working with health-related data. Re-identification risks of feature-rich data sets have led to the dissolution of the hard boundary between data protected by data protection laws (GDPR) and anonymized data sets. To solve this problem, the TrustNShare project is creating a transparent data trust that acts as a trusted intermediary. This allows for secure and controlled data exchange, while offering flexible datasharing options, considering trustworthiness, risk tolerance, and healthcare interoperability. Empirical studies and participatory research will be conducted to develop a trustworthy and effective data trust model.

Dataset search in biodiversity research: Do metadata in data repositories reflect scholarly information needs?

The increasing amount of publicly available research data provides the opportunity to link and integrate data in order to create and prove novel hypotheses, to repeat experiments or to compare recent data to data collected at a different time or place. However, recent studies have shown that retrieving relevant data for data reuse is a time-consuming task in daily research practice. In this study, we explore what hampers dataset retrieval in biodiversity research, a field that produces a large amount of heterogeneous data. In particular, we focus on scholarly search interests and metadata, the primary source of data in a dataset retrieval system. We show that existing metadata currently poorly reflect information needs and therefore are the biggest obstacle in retrieving relevant data. Our findings indicate that for data seekers in the biodiversity domain environments, materials and chemicals, species, biological and chemical processes, locations, data parameters and data types are important information categories. These interests are well covered in metadata elements of domain-specific standards. However, instead of utilizing these standards, large data repositories tend to use metadata standards with domain-independent metadata fields that cover search interests only to some extent. A second problem are arbitrary keywords utilized in descriptive fields such as title, description or subject. Keywords support scholars in a full text search only if the provided terms syntactically match or their semantic relationship to terms used in a user query is known.