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
Author Information
Harriet J A Teare: HeLEX Centre, University of Oxford, Ewert House, Banbury Road, Oxford, OX2 7DD, UK. harriet.teare@dph.ox.ac.uk. ORCID
Federico de Masi: Center for Biological Sequence Analysis, Department of Bio and Health Informatics, Technical University of Denmark, Building 208, DK-2800, Lyngby, Denmark.
Karina Banasik: Translational Disease Systems Biology, NNF Center for Protein Research, University of Copenhagen, Faculty of Health and Medical Sciences, Blegdamsvej 3B, DK-2200, Copenhagen, Denmark.
Anna Barnett: Division of Molecular & Clinical Medicine, School of Medicine, University of Dundee, Ninewells Hospital & Medical School, Dundee, UK.
Sanna Herrgard: Center for Biological Sequence Analysis, Department of Bio and Health Informatics, Technical University of Denmark, Building 208, DK-2800, Lyngby, Denmark.
Bernd Jablonka: Sanofi-Aventis Deutschland GmbH, Industriepark Höchst, 65926, Frankfurt, Germany.
Jacqueline W M Postma: Clinical Research Centre, Lund University Diabetes Centre, Box 50332, SE-202 13, Malmö, Sweden.
Timothy J McDonald: Blood Sciences, Template A2, Royal Devon and Exeter Hospital, Barrack Road, Exeter, EX2 5DW, UK.
Ian Forgie: Division of Molecular & Clinical Medicine, School of Medicine, University of Dundee, Ninewells Hospital & Medical School, Dundee, UK.
Piotr J Chmura: Center for Biological Sequence Analysis, Department of Bio and Health Informatics, Technical University of Denmark, Building 208, DK-2800, Lyngby, Denmark.
Emil K Rydzka: Center for Biological Sequence Analysis, Department of Bio and Health Informatics, Technical University of Denmark, Building 208, DK-2800, Lyngby, Denmark.
Ramneek Gupta: Center for Biological Sequence Analysis, Department of Bio and Health Informatics, Technical University of Denmark, Building 208, DK-2800, Lyngby, Denmark.
Soren Brunak: Center for Biological Sequence Analysis, Department of Bio and Health Informatics, Technical University of Denmark, Building 208, DK-2800, Lyngby, Denmark.
Ewan Pearson: Division of Molecular & Clinical Medicine, School of Medicine, University of Dundee, Ninewells Hospital & Medical School, Dundee, UK.
Jane Kaye: HeLEX Centre, University of Oxford, Ewert House, Banbury Road, Oxford, OX2 7DD, UK.
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.
