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; Soren 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 (Lead / Corresponding author), 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, Soren Brunak, Ewan Pearson, Jane Kaye

Population Health and Genomics

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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
Pages (from-to)	1-17
Number of pages	17
Journal	Life Sciences, Society and Policy
Volume	14
Issue number	1
DOIs	https://doi.org/10.1186/s40504-018-0083-0
Publication status	Published - 4 Sept 2018

Keywords

Data access
Data access committee
Governance
IMI project

ASJC Scopus subject areas

Philosophy
Biochemistry, Genetics and Molecular Biology (miscellaneous)
Management, Monitoring, Policy and Law

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10.1186/s40504-018-0083-0Licence: CC BY

Final Published Version
© The Author(s). 2018 Open Access 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.
Final published version, 1.16 MBLicence: CC BY

DIRECT: Diabetes Research on Patient Stratification (joint with 25 other partners)
Colhoun, H. (Investigator), Houston, G. (Investigator), Morris, A. (Investigator), Palmer, C. (Investigator) & Pearson, E. (Investigator)
COMMISSION OF THE EUROPEAN COMMUNITIES
1/02/12 → 28/02/27
Project: Research

Cite this

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

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

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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author = "Teare, {Harriet J. A.} and {de Masi}, Federico and Karina Banasik and Anna Barnett and Sanna Herrgard and Bernd Jablonka and Postma, {Jacqueline W. M.} and McDonald, {Timothy J.} and Ian Forgie and Chmura, {Piotr J.} and Rydzka, {Emil K.} and Ramneek Gupta and Soren Brunak and Ewan Pearson and Jane Kaye",

note = "The work leading to this publication has received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n°115317 (DIRECT), resources of which are composed of financial contribution from the European Union{\textquoteright}s Seventh Framework Programme (FP7/2007–2013) and EFPIA companies{\textquoteright} in-kind contribution. This work was also supported by the Novo Nordisk Foundation (grant NNF14CC0001 and NNF17OC0027594).",

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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, no. 1, 20, pp. 1-17. https://doi.org/10.1186/s40504-018-0083-0

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AU - Teare, Harriet J. A.

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AU - Herrgard, Sanna

AU - Jablonka, Bernd

AU - Postma, Jacqueline W. M.

AU - McDonald, Timothy J.

AU - Forgie, Ian

AU - Chmura, Piotr J.

AU - Rydzka, Emil K.

AU - Gupta, Ramneek

AU - Brunak, Soren

AU - Pearson, Ewan

AU - Kaye, Jane

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

Abstract

Keywords

ASJC Scopus subject areas

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Projects

DIRECT: Diabetes Research on Patient Stratification (joint with 25 other partners)

Cite this