Groundbreaking Publications on Data Sharing and Information Governance

1. Getting your DUCs in a row – standardising the representation of Digital Use Conditions: https://www.nature.com/articles/s41597-024-03280-6

This publication reports a robust, standard data structure that addresses the complex challenge of responsibly sharing research data, healthcare records, biosamples, and other biomedical resources. The Digital Use Conditions (DUC) framework aims to streamline the management of these resources, while respecting applicable use conditions. The DUC data structure balances the need for clear rules with the flexibility required for diverse applications, ensuring that patient care and scientific discovery are advanced responsibly.

2. Common conditions of use elements. Atomic concepts for consistent and effective information governance: https://www.nature.com/articles/s41597-024-03279-z

This publication introduces a core lexicon of 20 essential terms, refined from an initial set of 76, that digitally represent standardized ‘use condition’ concepts. Devised in conjunction with biobanks and registries, especially within the European Joint Programme for Rare Diseases, this new concept list will underpin data and sample sharing activities that are both practical and widely applicable. Specifically, by creating standardized Sharing Policy Profiles, one can manage and share biological resources more effectively, supporting software, training, and real-world projects.

Together, these publications describe a comprehensive approach to summarizing and managing use conditions for biomedical resources. The DUC schema offers a structured way to collect and standardize information, while the set of common use condition elements ensures consistency and clarity. By assigning permissions and restrictions, and specifying the scope and details of conditions, research activities can be better aligned with institutional missions, funding objectives, and regulatory requirements.