Engineering and Physical Sciences Research Council (EPSRC)
Doi
Abstract
CLEF is an MRC sponsored project in the E-Science programme that aims to
establish policies and infrastructure for the next generation of integrated clinical and
bioscience research. One of the major goals of the project is to provide a
pseudonymised repository of histories of cancer patients that can be accessed by
researchers. Robust mechanisms and policies are needed to ensure that patient
privacy and confidentiality are preserved while delivering a repository of such
medically rich information for the purposes of scientific research. This paper
summarises the overall approach adopted by CLEF to meet data protection
requirements, including the data flows and pseudonymisation mechanisms that are
currently being developed. Intended constraints and monitoring policies that will
apply to research interrogation of the repository are also outlined. Once evaluated, it
is hoped that the CLEF approach can serve as a model for other distributed
electronic health record repositories to be accessed for research