CLEF-Services

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.

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.