Please use this identifier to cite or link to this item: http://hdl.handle.net/2381/32464
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dc.contributor.authorBurton, P. R.-
dc.contributor.authorMurtagh, M. J.-
dc.contributor.authorBoyd, A.-
dc.contributor.authorWilliams, J. B.-
dc.contributor.authorDove, E. S.-
dc.contributor.authorWallace, Susan E.-
dc.contributor.authorTassé, A-M.-
dc.contributor.authorLittle, J.-
dc.contributor.authorChisholm, R. L.-
dc.contributor.authorGaye, A.-
dc.contributor.authorHveem, K.-
dc.contributor.authorBrookes, Anthony J.-
dc.contributor.authorGoodwin, P.-
dc.contributor.authorFistein, J.-
dc.contributor.authorBobrow, M.-
dc.contributor.authorKnoppers, B. M.-
dc.date.accessioned2015-07-01T13:37:37Z-
dc.date.available2015-07-01T13:37:37Z-
dc.date.issued2015-06-25-
dc.identifier.citationBioinformatics, 2015, 1–8en
dc.identifier.issn1367-4803-
dc.identifier.urihttp://bioinformatics.oxfordjournals.org/content/early/2015/06/24/bioinformatics.btv279en
dc.identifier.urihttp://hdl.handle.net/2381/32464-
dc.description.abstractMotivation: The data that put the ‘evidence’ into ‘evidence-based medicine’ are central to developments in public health, primary and hospital care. A fundamental challenge is to site such data in repositories that can easily be accessed under appropriate technical and governance controls which are effectively audited and are viewed as trustworthy by diverse stakeholders. This demands socio-technical solutions that may easily become enmeshed in protracted debate and controversy as they encounter the norms, values, expectations and concerns of diverse stakeholders. In this context, the development of what are called ‘Data Safe Havens’ has been crucial. Unfortunately, the origins and evolution of the term have led to a range of different definitions being assumed by different groups. There is, however, an intuitively meaningful interpretation that is often assumed by those who have not previously encountered the term: a repository in which useful but potentially sensitive data may be kept securely under governance and informatics systems that are fit-for-purpose and appropriately tailored to the nature of the data being maintained, and may be accessed and utilized by legitimate users undertaking work and research contributing to biomedicine, health and/or to ongoing development of healthcare systems. Results: This review explores a fundamental question: ‘what are the specific criteria that ought reasonably to be met by a data repository if it is to be seen as consistent with this interpretation and viewed as worthy of being accorded the status of ‘Data Safe Haven’ by key stakeholders’? We propose 12 such criteria.en
dc.description.sponsorshipThe Data to Knowledge (D2K) Research Group (Burton, Murtagh, Boyd, Gaye) is supported by funding from: the European Union’s Seventh Framework Programme - BioSHaRE-EU [261433] (Biobank Standardization and Harmonization for Research Excellence in the European Union) and BBMRI-LPC [313010] (Biobanking and Biomolecular Resources Research Infrastructure—Large Prospective Cohorts); Medical Research Council and Wellcome Trust, 58READIE project [G1001799/2] (Realizing Easy Access to Data and Infrastructural Enhancement for the 1958 Birth Cohort Biomedical Resource). The Project to Enhance ALSPAC through Record Linkage (PEARL) [WT086118/Z/08/Z) (Boyd) is supported by the Wellcome Trust. Both D2K and PEARL are also supported under a strategic award from MRC and Wellcome Trust for the ALSPAC project [102215/Z/13/Z], and the Welsh and Scottish Farr Institutes, MRC funded E-Health Informatics Research Centres (EHIRCs) [MR/K006525/1; MR/K007017/1]. The PERSPECTIVE project (PErsonalized Risk Stratification for Prevention and Early deteCTIon of breast cancer) (Knoppers, Dove) is supported by funding from Genome Canada, Genome Quebec, the Canadian Institutes of Health Research and the Quebec Breast Cancer Foundationen
dc.language.isoenen
dc.publisherOxford University Press (OUP)en
dc.relation.urihttp://www.ncbi.nlm.nih.gov/pubmed/26112289-
dc.rights© The Author 2015. Published by Oxford University Press. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (CC BY 4.0) (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.en
dc.titleData Safe Havens in health research and healthcare.en
dc.typeJournal Articleen
dc.identifier.doi10.1093/bioinformatics/btv279-
dc.identifier.eissn1367-4811-
dc.identifier.piibtv279-
dc.description.statusPeer-revieweden
dc.description.versionPublisher Versionen
dc.type.subtypeREVIEW;JOURNAL ARTICLE-
pubs.organisational-group/Organisationen
pubs.organisational-group/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGYen
pubs.organisational-group/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/School of Medicineen
pubs.organisational-group/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/School of Medicine/Department of Health Sciencesen
pubs.organisational-group/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/Themesen
pubs.organisational-group/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/Themes/Populationen
Appears in Collections:Published Articles, Dept. of Health Sciences

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