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Getting your DUCs in a row - standardising the representation of Digital Use Conditions
Medicine and HealthScientific Data

Getting your DUCs in a row - standardising the representation of Digital Use Conditions

F. Jeanson, S. J. Gibson, et al.

Explore the complex landscape of responsible research data sharing, vital for enhancing patient care and advancing scientific discovery. This innovative study proposes a new framework, Digital Use Conditions (DUC), to manage diverse data sharing requirements. Conducted by a team of experts including Francis Jeanson and Spencer J. Gibson, this work promises to transform how we handle digital use conditions.... show more
Abstract
Improving patient care and advancing scientific discovery requires responsible sharing of research data, healthcare records, biosamples, and biomedical resources that must also respect applicable use conditions. Defining a standard to structure and manage these use conditions is a complex and challenging task. This is exemplified by a near unlimited range of asset types, a high variability of applicable conditions, and differing applications at the individual or collective level. Furthermore, the specifics and granularity required are likely to vary depending on the ultimate contexts of use. All these factors confound alignment of institutional missions, funding objectives, regulatory and technical requirements to facilitate effective sharing. The presented work highlights the complexity and diversity of the problem, reviews the current state of the art, and emphasises the need for a flexible and adaptable approach. We propose Digital Use Conditions (DUC) as a framework that addresses these needs by leveraging existing standards, striking a balance between expressiveness versus ambiguity, and considering the breadth of applicable information with their context of use.
Publisher
Scientific Data
Published On
May 08, 2024
Authors
Francis Jeanson, Spencer J. Gibson, Pinar Alper, Alexander Bernier, J. Patrick Woolley, Daniel Mietchen, Andrzej Strug, Regina Becker, Pim Kamerling, Maria del Carmen Sanchez Gonzalez, Nancy Mah, Ann Novakowski, Mark D. Wilkinson, Oussama Mohammed Benhamed, Annalisa Landi, Georg Philip Krog, Heimo Müller, Umar Riaz, Colin Veal, Petr Holub, Esther van Enckevort, Anthony J. Brookes
Tags
data sharingresearch ethicshealthcare recordsdigital use conditionsscientific discoveryontologyframework
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