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

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 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 language	English
Article number	20
Journal	Life Sciences, Society and Policy
Volume	14
Number of pages	17
ISSN	1746-5354
DOIs	https://doi.org/10.1186/s40504-018-0083-0
Publication status	Published - 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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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, Article 20. https://doi.org/10.1186/s40504-018-0083-0

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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.",

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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, 20. https://doi.org/10.1186/s40504-018-0083-0

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AU - Teare, Harriet J. A.

AU - De Masi, Federico

AU - Banasik, Karina

AU - Barnett, Anna

AU - Herrgard, Sanna

AU - Jablonka, Bernd

AU - Postma, Jacqueline W. M.

AU - McDonald, Timothy J.

AU - Forgie, Ian

AU - Chmura, Piotr Jaroslaw

AU - Rydzka, Emil K.

AU - Gupta, Ramneek

AU - Brunak, Søren

AU - Pearson, Ewan

AU - Kaye, Jane

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PY - 2018

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AB - 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.

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

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Keywords

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