CLEF Launched its 22,000 Case Clinical Data Repository for Security Controlled Testing in Interactive Data-Management at the 3rd CLEF Industrial Forum

Researchers of the Clinical e-Science Framework (CLEF) Project announced that a databank of 22,00 cancer cases will soon be ready for internal testing across the CLEF network for both data-mining and knowledge-building.  The databank is being equipped with sophisticated security systems, developed by CLEF, which will ensure secure and ethical access to the databank for the different types of users, which will initially include clinicians and academic researchers.

On the announcement of the launch, Dr. Dipak Kalra, Senior Lecturer at the Centre for Health Informatics & Multiprofessional Education, University College London said: “While the NHS Spine will be optimised to support health care and health service management, the CLEF repository is optimised to treat electronic healthcare records (EHR) as an analysable knowledge resource that is deployable UK-wide and internationally”.

Developments in communications and medical technologies are bringing rapid advances in clinical care, increasing the need for integration of clinical research and clinical applications.  An integrated, structured data repository will create access to information derived from clinical data for researchers, medics and patients over communication channels of choice, enabling previously unthinkable rapid advances in the modernisation of medicine and healthcare. 

 But integration of clinical information into such a framework is not a straightforward task; clinical histories, referrals and pathology reports typically originate as free text that CLEF first needs to convert into structured electronic data formats.   In addition, sharing clinical data between various user groups is subject to very strict medico-legal and ethical legislations, which create an added level of complexity when technological solutions are concerned.  

 “CLEF is helping to resolve the relevant privacy and security issues both via original research and by contributing to setting international standards.  The CLEF software is generic and grid enabled and integrates with NCRI, EU and US data management standards.” said Professor Alan Rector, Professor of Medical Informatics at The University of Manchester and Co-Director of CLEF Services.

CLEF’s announcement was made at the 3^rd CLEF Industrial Forum, a 2-day annual event run since 2003.  The Forum brought together representatives from many stakeholder groups, who all agreed that improved usability of clinical data is a priority task that must be addressed via close, continuous discussions between the technologists and various user groups.  Dr. Colin Henderson, Information Based Medicine Specialist at IBM Healthcare and Life Sciences praised CLEF for taking the lead in this important and complex task:  "The CLEF initiative is a great example of top academics working closely with healthcare practitioners and institutes to explore the ways in which technology can make a difference to clinical research and care. Using technology as an enabling tool to provide informed, secure access to clinical and life sciences data is critical in the move towards more personalised and informed medicine".

In his opening speech, Professor David Ingram, Director of the Centre for Health Informatics & Multiprofessional Education at University College London and Co-Director of CLEF explained that “CLEF encourages all stakeholders to collaborate on creating an interoperable informatics platform for the management of clinical data.  Such systems will help both patients and professionals by translating research for clinicians and patients and interpreting clinical data for researchers.  Our vision is to provide a tool that modernizes clinical research, teaching and practices by enabling fast, secure and ethical access to the right information.”

The Forum welcomed several distinguished speakers, including Professor Martin Severs (Director of Clinical Assurance, NPfIT), Professor Tony Hey (Director of e-Science Core Program, DTI) and Professor Richard Begent (Head of Clinical Oncology, UCL), who helped to facilitate discussion on the research, healthcare and e-science contexts of CLEF.   Participants included representatives from many major ICT companies, including SUN Microsystems, IBM Life Sciences, BT Exact, GE Healthcare, Oracle Corporation, Cisco Systems, Kodak, the National Cancer Research Institute and several NHS Trusts.

 “Oracle is delighted to be involved with the CLEF Forum.  Within Healthcare and Life science we are seeing an ever increasing demand for information and data storage however the real challenge is interoperable information that clinicians can use reliably that will improve patient healthcare," said Jeremy R L Nettle European Director EMEA Healthcare.

"I have found the CLEF Industrial Forum very valuable to keep abreast of the fast progress of this national initiative and will recommend it to all potential healthcare industry partners to accelerate future collaboration." concluded Corinne Marsolier, Manager of Internet Business Solutions at Cisco Systems, who arrived from France to the meeting.

Contact:    Dr. Aniko Zagon

                   CLEF Industry Liaison

                   Mob: 7970-13-681

                   E-mail: azagon.sln2002@london.edu 

Sponsored by the DTI and MRC