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Getting your DUCs in a row - standardising the representation of Digital Use Conditions
Scientific Data ( IF 9.8 ) Pub Date : 2024-05-08 , DOI: 10.1038/s41597-024-03280-6
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

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.



中文翻译:

让您的 DUC 排成一行 - 标准化数字使用条件的表示

改善患者护理和推进科学发现需要负责任地共享研究数据、医疗记录、生物样本和生物医学资源,这些资源还必须尊重适用的使用条件。定义一个标准来构建和管理这些使用条件是一项复杂且具有挑战性的任务。资产类型的范围几乎无限、适用条件的高度可变性以及个人或集体层面的不同应用就是例证。此外,所需的细节和粒度可能会根据最终使用环境而变化。所有这些因素都混淆了机构使命、资助目标、监管和技术要求的一致性,以促进有效共享。所提出的工作强调了问题的复杂性和多样性,回顾了当前的技术水平,并强调了对灵活和适应性强的方法的需要。我们提出数字使用条件(DUC)作为一个框架,通过利用现有标准、在表达性与模糊性之间取得平衡、并考虑适用信息的广度及其使用环境来满足这些需求。

更新日期:2024-05-08
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