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

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...

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Autores principales: Teare, Harriet J. A., de Masi, Federico, Banasik, Karina, Barnett, Anna, Herrgard, Sanna, Jablonka, Bernd, Postma, Jacqueline W. M., McDonald, Timothy J., Forgie, Ian, Chmura, Piotr J., Rydzka, Emil K., Gupta, Ramneek, Brunak, Soren, Pearson, Ewan, Kaye, Jane
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2018
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6123336/
https://www.ncbi.nlm.nih.gov/pubmed/30182269
http://dx.doi.org/10.1186/s40504-018-0083-0
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author Teare, Harriet J. A.
de Masi, Federico
Banasik, Karina
Barnett, Anna
Herrgard, Sanna
Jablonka, Bernd
Postma, Jacqueline W. M.
McDonald, Timothy J.
Forgie, Ian
Chmura, Piotr J.
Rydzka, Emil K.
Gupta, Ramneek
Brunak, Soren
Pearson, Ewan
Kaye, Jane
author_facet Teare, Harriet J. A.
de Masi, Federico
Banasik, Karina
Barnett, Anna
Herrgard, Sanna
Jablonka, Bernd
Postma, Jacqueline W. M.
McDonald, Timothy J.
Forgie, Ian
Chmura, Piotr J.
Rydzka, Emil K.
Gupta, Ramneek
Brunak, Soren
Pearson, Ewan
Kaye, Jane
author_sort Teare, Harriet J. A.
collection PubMed
description 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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spelling pubmed-61233362018-09-18 The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project Teare, Harriet J. A. de Masi, Federico Banasik, Karina Barnett, Anna Herrgard, Sanna Jablonka, Bernd Postma, Jacqueline W. M. McDonald, Timothy J. Forgie, Ian Chmura, Piotr J. Rydzka, Emil K. Gupta, Ramneek Brunak, Soren Pearson, Ewan Kaye, Jane Life Sci Soc Policy Research 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. Springer Berlin Heidelberg 2018-09-04 /pmc/articles/PMC6123336/ /pubmed/30182269 http://dx.doi.org/10.1186/s40504-018-0083-0 Text en © The Author(s). 2018 Open AccessThis 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.
spellingShingle Research
Teare, Harriet J. A.
de Masi, Federico
Banasik, Karina
Barnett, Anna
Herrgard, Sanna
Jablonka, Bernd
Postma, Jacqueline W. M.
McDonald, Timothy J.
Forgie, Ian
Chmura, Piotr J.
Rydzka, Emil K.
Gupta, Ramneek
Brunak, Soren
Pearson, Ewan
Kaye, Jane
The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project
title The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project
title_full The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project
title_fullStr The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project
title_full_unstemmed The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project
title_short The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project
title_sort governance structure for data access in the direct consortium: an innovative medicines initiative (imi) project
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6123336/
https://www.ncbi.nlm.nih.gov/pubmed/30182269
http://dx.doi.org/10.1186/s40504-018-0083-0
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