Presented by:
Andy Boyd
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.
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.
