CLEF aims to develop rigorous generic methods for capturing and managing clinical information in patient care and for integrating that information into clinical and basic bioscience research. CLEF will focus on cancer, but the goal is to produce a robust framework which can be used in many areas of clinical medicine and research based on emerging knowledge management techniques within the E-Science/Grids programme.
There is growing recognition that advances in health informatics are central both to the modernisation of health services and to successfully exploiting our rapidly expanding knowledge of genetics and molecular processes ('-omics'). Systems dealing with clinical information - what doctors, nurses and other healthcare professionals have heard, seen thought, and done - face major barriers in capturing information and assuring its quality. A more unified health service and more effective collaborative multidisciplinary research community both require significant progress in overcoming these barriers - as well as adapting the general e-Science issues of cooperation, integration, and dissemination to clinical needs. The scale, diversity and complexity of the problems require a coherent approach that draws on and contributes to the emerging common architectures and services of the e-Science/Grid communities.
The specific objectives are:
Overall, CLEF's goal is to embed the full information cycle - capture, integration, interpretation, use, aggregation, analysis and re-use - within practical clinical systems while observing strict ethical and legal requirements for confidentiality and consent. To do so involves addressing organisational issues and solving technical problems in language technology, information integration, and information presentation. In particular CLEF seeks to unlock the information now held only as text in reports and summaries which is therefore largely unavailable for automatic analysis. It seeks to find an optimum balance between language and structured information for clinical information and to integrate reports of clinical observations and interpretations with laboratory data, images, genetic, gene expression, and many other forms of data. CLEF also seeks to address the scale and complexity of clinical information - schemas of tens or hundreds of thousands of interlinked concepts where most other e-Science communities as yet deal only in hundreds or thousands. It will then make this information available to meet the needs of clinical research through novel tools for collaborative work and clinical e-Science. These same technologies will also provide the core for new patient care systems to serve integrated multiprofessional teams and patient communities.
CLEF is a three year project but conceived as the core of a long term programme of research. The collaboration has two centres - a) A clinical centre around University College London Centre for Health Informatics and Multiprofessional Education (UCL/CHIME) linked to the Royal Marsden NHS Trust, the North Central and South West London Cancer Networks, and the Judge Institute for Management studies at Cambridge, and b) a technological centre around the departments of computer science at the universities of Manchester and Sheffield and the Information Technology Research Institute (ITRI) at University of Brighton drawing on existing eScience developments through myGrid and related programmes.
The research will be embedded within the everyday large scale world of service delivery in a leading cancer institution (The Marsden) and two cancer networks (NC and NW London) of the NHS. It will draw on leading cancer research units (UCL), spanning the whole cycle of information management from genetics and structural biology to multicentre clinical trials and multiprofessional information systems for patients in primary care. Though focused on cancer, CLEF will be informed by the many research programmes of its participants in additional clinical fields such as in cardiovascular disease, genetics and neuroscience.
CLEF will establish the nucleus of an open Clinical e-Science/Grid Community for the UK, closely linked with existing international partnerships and open initiatives in health informatics and e-Science. The research teams will be made widely available, and CLEF is open to partnerships across the whole of the e-science programme.
The full case for support proposal document is available on line here.
May 2000