1. The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project
- Author
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Emil K. Rydzka, Søren Brunak, Karina Banasik, Ian M Forgie, Timothy J. McDonald, Jacqueline W. M. Postma, Ramneek Gupta, Harriet Teare, Anna Barnett, Bernd Jablonka, Sanna Herrgard, Jane Kaye, Federico De Masi, Piotr Jaroslaw Chmura, and Ewan R. Pearson
- Subjects
0301 basic medicine ,Knowledge management ,Multiple Partners ,Biomedical Research ,Databases, Factual ,Process (engineering) ,IMI project ,Management, Monitoring, Policy and Law ,Biochemistry, Genetics and Molecular Biology (miscellaneous) ,Public-Private Sector Partnerships ,Access to Information ,03 medical and health sciences ,Data access committee ,Humans ,Clinical Governance ,Data access ,Structure (mathematical logic) ,Governance ,lcsh:R723-726 ,business.industry ,Corporate governance ,Private sector ,Philosophy ,030104 developmental biology ,Business ,Internal governance ,lcsh:Medical philosophy. Medical ethics - 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.
- Published
- 2018
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