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 J Chmura; Emil K Rydzka; Ramneek Gupta; Søren Brunak; Ewan Pearson; Jane Kaye

doi:10.1186/s40504-018-0083-0

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 J Chmura, Emil K Rydzka, Ramneek Gupta, Søren Brunak, Ewan Pearson, Jane Kaye

Disease Systems Biology Program

2 Citations (Scopus)

62 Downloads (Pure)

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 language	English
Article number	20
Journal	Life Sciences, Society and Policy
Volume	14
Issue number	1
Pages (from-to)	1-17
ISSN	1746-5354
DOIs	https://doi.org/10.1186/s40504-018-0083-0
Publication status	Published - 4 Sept 2018

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The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) projectFinal published version, 1.16 MB

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Teare, H. J. A., de Masi, F., Banasik, K., Barnett, A., Herrgard, S., Jablonka, B., Postma, J. W. M., McDonald, T. J., Forgie, I., Chmura, P. J., Rydzka, E. K., Gupta, R., Brunak, S., Pearson, E., & Kaye, J. (2018). The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project. Life Sciences, Society and Policy, 14(1), 1-17. [20]. https://doi.org/10.1186/s40504-018-0083-0

Teare, HJA, de Masi, F, Banasik, K, Barnett, A, Herrgard, S, Jablonka, B, Postma, JWM, McDonald, TJ, Forgie, I, Chmura, PJ, Rydzka, EK, Gupta, R, Brunak, S, Pearson, E & Kaye, J 2018, 'The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project', Life Sciences, Society and Policy, vol. 14, no. 1, 20, pp. 1-17. https://doi.org/10.1186/s40504-018-0083-0

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

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