Supporting UK-wide e-clinical trials and studies

Abstract

As clinical trials and epidemiological studies become increasingly large, covering wider (national) geographical areas and involving ever broader populations, the need to provide an information management infrastructure that can support such endeavours is essential. A wealth of clinical data now exists at varying levels of care (primary care, secondary care, etc.). Simple, secure access to such data would greatly benefit the key processes involved in clinical trials and epidemiological studies: patient recruitment, data collection and study management. The Grid paradigm provides one model for seamless access to such data and support of these processes. The VOTES project (Virtual Organisations for Trials and Epidemiological Studies) is a collaboration between several UK institutions to implement a generic framework that effectively leverages the available health-care information across the UK to support more efficient gathering and processing of trial information. The structure of the information available in the health-care domain in the UK itself varies broadly in-line with the national boundaries of the constituent states (England, Scotland, Wales and Northern Ireland). Technologies must address these political boundaries and the impact these boundaries have in terms of for example, information governance, policies, and of course large-scale heterogeneous distribution of the data sets themselves. This paper outlines the methodology in implementing the framework between three specific data sources that serve as useful case studies: Scottish data from the Scottish Care Information (SCI) Store data repository, data on the General Practice Research Database (GPRD) diabetes trial at Imperial College London, and benign prostate hypoplasia (BPH) data from the University of Nottingham. The design, implementation and wider research issues are discussed along with the technological challenges encountered in the project in the application of Grid technologies