J. Milan’s research while affiliated with The Royal Marsden NHS Foundation Trust and other places

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. 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. 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. 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.

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.

CLEF (Co-operative Clinical e-Science Framework) 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. It is developing methods for managing and using pseudonymised repositories of the long-term patient histories which can be linked to genetic, genomic information or used to support patient care. CLEF concentrates on removing key barriers to managing such repositories – ethical issues, information capture, integration of disparate sources into coherent “chronicles” of events, useroriented mechanisms for querying and displaying the information, and compiling the required knowledge resources. This paper describes the overall information flow and technical approach designed to meet these aims within a Grid framework.

The CLEF project aims to establish a secure socio-technical framework that enables sharing patient data for the purposes of research whilst maintaining patient privacy and confidentiality. The value of shared data is increased by integrating, within a secure repository, both existing structured information (lab reports etc) with information extracted from texts (clinic letters), and using clinical inferencing and filtering techniques to derive a canonical view of the record called the 'chronicle'. Statistical disclosure control and Language generation technologies are used to simplify and control access to this complex resource.

CLEF (Co-operative Clinical E-Science Framework) 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 biosci- ence research. It is developing methods for managing and using pseudonymised repositories of the long-term patient histories which can be linked to genetic, genomic information or used to support patient care. CLEF concentrates on removing key barriers to managing such repositories – ethical issues, information capture, integration of disparate sources into coherent “chronicles” of events, user-oriented mechanisms for querying and displaying the information, and compiling the required knowledge resources. This paper describes the overall information flow and technical ap- proach designed to meet these aims within a Grid framework

CLEF aims to join up clinical care and biomedical research. It is developing methods for managing and using pseudonymised repositories of the long-term patient histories which can be linked to genetic, genomic and image information or used to support patient care. CLEF concentrates on removing key barriers to managing such repositories – ethical issues, information capture, integration of disparate sources into coherent “chronicles” of events, user-oriented mechanisms for querying and displaying the information, and compiling the required knowledge resources. This paper describes the overall information flow and technical approach designed to meet these aims within a Grid framework. Details of work on language technology and ethical issues are discussed in separate papers at this conference.