Kalra, D.; Singleton, P.; Ingram, D.; Milan, J.; Mackay, J.; Detmer, D.; Rector, A.; (2003) Security and confidentiality approach for the Clinical E-Science Framework (CLEF). In: Cox, S., (ed.) Proceedings of UK e-Science All Hands Meeting 2003. (pp. pp. 825-832). Engineering and Physical Sciences Research Council (EPSRC)

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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.

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