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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. LU ; McDonald, Timothy J.; Forgie, Ian and Chmura, Piotr J., et al. (2018) In Life Sciences, Society and Policy 14(1).
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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Contribution to journal
publication status
published
subject
keywords
Data access, Data access committee, Governance, IMI project
in
Life Sciences, Society and Policy
volume
14
issue
1
external identifiers
  • scopus:85053157053
DOI
10.1186/s40504-018-0083-0
language
English
LU publication?
yes
id
7dbf5e1e-c2ea-470d-b07a-f73770b5bc71
date added to LUP
2018-10-12 08:21:13
date last changed
2019-01-06 14:09:42
@article{7dbf5e1e-c2ea-470d-b07a-f73770b5bc71,
  abstract     = {<p>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.</p>},
  articleno    = {20},
  author       = {Teare, Harriet J.A. and De Masi, Federico and Banasik, Karina and Barnett, Anna and Herrgard, Sanna and Jablonka, Bernd and Postma, Jacqueline W.M. and McDonald, Timothy J. and Forgie, Ian and Chmura, Piotr J. and Rydzka, Emil K. and Gupta, Ramneek and Brunak, Soren and Pearson, Ewan and Kaye, Jane},
  keyword      = {Data access,Data access committee,Governance,IMI project},
  language     = {eng},
  month        = {09},
  number       = {1},
  series       = {Life Sciences, Society and Policy},
  title        = {The governance structure for data access in the DIRECT consortium : An innovative medicines initiative (IMI) project},
  url          = {http://dx.doi.org/10.1186/s40504-018-0083-0},
  volume       = {14},
  year         = {2018},
}