Summary
Objectives:
CLEF is an MRC sponsored project in the E-Science programme that aims to establish
methodologies and a technical infrastructure for the next generation of integrated
clinical and bioscience research.
Methods:
The heart of the CLEF approach to this challenge is to design and develop a pseudonymised
repository of histories of cancer patients that can be accessed by researchers. Robust
mechanisms and policies have been developed to ensure that patient privacy and confidentiality
are preserved while delivering a repository of such medically rich information for
the purposes of scientific research.
Results:
This paper summarises the overall approach adopted by CLEF to meet data protection
requirements, including the data flows, pseudonymisation measures and additional monitoring
policies that are currently being developed.
Conclusion:
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.
Keywords
Electronic health records - data repository - pseudonymisation - grid computing -
access control