Lead Research Organisation: University of Manchester
Department Name: Computer Science


Issues of privacy and security of medical information are of prime interest to the public, as witness the lively discussions and all-too-frequent sensationalist articles in the news media. CLEF is addressing these issues both technically and, more importantly, at the level of public policy and the direct engagement of public in discussions and workshops to work towards a wider consensus on the balance between the benefits to science and the risks to individual privacy.

CLEF is based on a person-based approach to research and care. The underlying technologies are specifically designed to be capable of being redeployed to make increased information on their health and course of treatment available provided the ethical barriers can be overcome. Future research will focus on exploiting this potential to support truly patient centred healthcare.

Technical Summary

The overall goal of the Clinical E-Science Framework (CLEF) programme is to ?join up? clinical care and post-genomic research It aims to reduce the manual effort of managing clinical data for post genomic research, by improving clinical information capture and re-use and by improving usability and analysis, and visualisation of that data.

The CLEF Pilot was funded by the MRC in the first round of E-Science projects. CLEF-Services will take the next steps towards deploying CLEF as generic ?horizontal? services as part of the health E-Science/Grid infrastructure to support ?vertical? applications ? clinical trials and longitudinal studies in specific clinical domains, first in cancer and progressively in other clinical fields.

CLEF-Services addresses issues encountered in the CLEF pilot in managing privacy and security and takes advantage of new opportunities provided by the advent of the NHS Spine : part of the massive investment in the NHS National Programme for IT (NPfIT).

CLEF-Services will a) Bring a multidisciplinary team to the key problem of privacy; b) package elements of the pilot scheme as Grid services and evaluate their use in the clinical centres; c) make its results and links to underlying E-Science infrastructure available by collaborators in vertical E-Science projects and in the National Cancer Research Institute (NCRI) bioinformatics strategy; d) Develop and pilot methodologies for interworking between the new NHS ?Spine? and the E-Science/Grid Infrastructure; e) Move the emphasis from clinical data acquisition towards analysis, re-use and visualisation; f) Contribute nationally and internationally to standards for clinical information interchange, metadata, and knowledge management.

At the heart of the CLEF programme are pseudonymised clinical information repositories that are a) ethically sound; b) rich enough to answer the fundamental questions about patient care: ?What was done and why?? ?What happened and why??; c) capable of linking to the ?Spine? of the NHS National Programme for Information Technology; d) capable of linking to genetic, genomic, image, and other forms of multimedia information.


10 25 50
publication icon
Roberts A (2008) Mining clinical relationships from patient narratives. in BMC bioinformatics

publication icon
Hallett C (2007) Composing Questions through Conceptual Authoring in Computational Linguistics

publication icon
Roberts A (2009) Building a semantically annotated corpus of clinical texts. in Journal of biomedical informatics

Description Development of MSC course module
Geographic Reach Europe 
Policy Influence Type Influenced training of practitioners or researchers
Impact Recruitment of MSc students to a new module within a Health Informatics MSC. Students come mainly from EU, majority NHS sponsored.
Description Adminstrative Data Liason Service
Amount £650,000 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 09/2008 
End 09/2011
Description EP/G032459/1 SWAT (Semantic Web Authoring Tool)
Amount £374,430 (GBP)
Funding ID EP/G032459/1 
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Public
Country United Kingdom
Start 05/2009 
End 05/2012
Description UKCRC grant
Amount £134,000 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 03/2009 
End 03/2011
Description Wellcome/EPSRC EHRs and Databases
Amount £672,034 (GBP)
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 12/2009 
End 06/2012
Title Key Variable Mapping System 
Description A databse based tool for identifying and classifying data in the data environment 
Type Of Material Database/Collection of Data/Biological Samples 
Provided To Others? No  
Impact This tool is utalised as part of the Data Environment Analysis Service, funded by theoffice for National statistics which provides input into national daat dsisemination policy. 
Description Data Environment Analaysis Service 
Organisation Office for National Statistics
Country United Kingdom 
Sector Private 
PI Contribution Development of New methods for analysising the Data Environment. Carrying out data environment mapping exercises
Impact Key variable mapping system Conference papers
Start Year 2008
Description Siemens Health - Manchester Clinical Systems Collaboration 
Organisation Siemens Healthcare
Department Siemens Medical Solutions
Country Germany 
Sector Private 
PI Contribution Development of architetecture for using OWL to support context sensitive documenttion and suggestions and association Knowledge Management Environment.
Collaborator Contribution Support for development of open source tooling relevant to the resource including plugins for Protege IV, development of OPPL, and extention of the FaCT++ classifier
Impact Prototype system is being tested prior to deployment.
Start Year 2006
Description Input to international standardisation 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Primary Audience Policymakers/politicians
Results and Impact Utilised results of the CLEF Services project to provide expert input to the development of ISO standards on Clinical Data Warehouse design, Categorisation of purposes for the use of personal health information and Requirements for an EHR Reference Architecture.

ISO Standards: one published as a TS, one pre-publication as a TS, one in final ballot as an IS.
Year(s) Of Engagement Activity 2006,2007,2008,2009,2010