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‘Data Safe Havens’ as a framework to support record linkage in observational studies: evidence from the Project to Enhance ALSPAC through Record Linkage (PEARL).

Presented by: 
Andy Boyd University of Bristol
Date: 
Wednesday 14th September 2016 - 10:30 to 11:00
Venue: 
INI Seminar Room 1
Abstract: 
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).  

In this paper I will describe our data linkage experiences gained through the Project to Enhance ALSPAC through Record Linkage (PEARL); a project aiming to establish linkages between participants of the ALSPAC birth cohort study and their routine records. This exemplar illustrates how the governance and technical solutions encompassed within the ALSPAC Data Safe Haven have helped counter and address the real world data linkage challenges we have faced.
University of Cambridge Research Councils UK
    Clay Mathematics Institute London Mathematical Society NM Rothschild and Sons