The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project

Harriet J. A. Teare*, Federico De Masi, Karina Banasik, Anna Barnett, Sanna Herrgard, Bernd Jablonka, Jacqueline W. M. Postma, Timothy J. McDonald, Ian Forgie, Piotr Jaroslaw Chmura, Emil K. Rydzka, Ramneek Gupta, Søren Brunak, Ewan Pearson, Jane Kaye

*Corresponding author for this work

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    Abstract

    Biomedical research projects involving multiple partners from public and private sectors require coherent internal governance mechanisms to engender good working relationships. The DIRECT project is an example of such a venture, funded by the Innovative Medicines Initiative Joint Undertaking (IMI JU). This paper describes the data access policy that was developed within DIRECT to support data access and sharing, via the establishment of a 3-tiered Data Access Committee. The process was intended to allow quick access to data, whilst enabling strong oversight of how data were being accessed and by whom, and any subsequent analyses, to contribute to the overall objectives of the consortium.
    Original languageEnglish
    Article number20
    JournalLife Sciences, Society and Policy
    Volume14
    Number of pages17
    ISSN1746-5354
    DOIs
    Publication statusPublished - 2018

    Bibliographical note

    This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

    Keywords

    • IMI project
    • Governance
    • Data access
    • Data access committee

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