Kalra, D.; Singleton, P.; Milan, J.; MacKay, J.; Detmer, D.; Rector, A.; Ingram, D.; (2005) Security and confidentiality approach for the Clinical E-Science Framework (CLEF). Methods of Information in Medicine , 44 (2) pp. 193-197.
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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.
|Title:||Security and confidentiality approach for the Clinical E-Science Framework (CLEF)|
|Open access status:||An open access version is available from UCL Discovery|
|Keywords:||Electronic health records, data repository, pseudonymisation, grid computing, access control|
|UCL classification:||UCL > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health Care > CHIME|
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