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University of Cambridge > Talks.cam > Isaac Newton Institute Seminar Series > ‘Data Safe Havens’ as a framework to support record linkage in observational studies: evidence from the Project to Enhance ALSPAC through Record Linkage (PEARL).
‘Data Safe Havens’ as a framework to support record linkage in observational studies: evidence from the Project to Enhance ALSPAC through Record Linkage (PEARL).Add to your list(s) Download to your calendar using vCal
If you have a question about this talk, please contact INI IT. This talk has been canceled/deleted The health research community are engaged in projects which require a wealth of data. These data can be drawn directly from research participants, or via linkage to participants’ routine records. Frequently, investigators require information from multiple sources with multiple legal owners. A fundamental challenge for data managers – such as those maintaining cohort study databanks – is to establish data processing and analysis pipelines that meet the legal, ethical and privacy expectations of participants and data owners alike. 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, ‘Data Safe Havens’ can provide a framework for repositories in which sensitive data are kept securely within governance and informatics systems that are fit-for-purpose, appropriately tailored to the data, while being accessible to legitimate users for legitimate purposes (see Burton et al, 2015. http://www.ncbi.nlm.nih.gov/pubmed/26112289). This talk is part of the Isaac Newton Institute Seminar Series series. This talk is included in these lists:This talk is not included in any other list Note that ex-directory lists are not shown. |
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