Abstracts

Clinical research is an information intensive business involving the integration of different types of data including unstructured and structured text, alphanumeric, diagnostic image data, sound and video. Data collection and management in research proves cumbersome due to limitations posed by incomplete, inaccessible, unreadable paper charts or data stored on disparate electronic databases, compromising quality, integrity and integration of data. For example, identification of patients who meet inclusion criteria for clinical research studies is arduous. Reliability of phenotyping for genetic research can be similarly compromised. A secure, standardised EPR can overcome data management limitations by allowing multiple users simultaneous access to information at different locations. It facilitates ease of updating, interrogation, auditing and detailed analysis of complex data. The aim is to develop an epilepsy EPR to support epilepsy clinical and research services., A review of various research projects in the epilepsy programme was conducted including: imaging research, SUDEP, pharmacogenetics, and epilepsy and pregnancy. Interviews with researchers were carried out to understand information requirements. Strands of information common to all projects and project specific information was recorded. The feedback was used to build and tailor system screens more appropriate to user needs. Reports were constructed to understand how researchers interrogate the system and identify trend data required for statistical reporting., The epilepsy EPR is at an advanced stage with the development of five core components including: clinic-administration , demographics, social history, medications and epilepsy history. Technical development is based on international healthcare standards to facilitate exchange of data between different systems. It has two components: one manages generic patient information and one that manages epilepsy specific information based on the International League Against Epilepsy (ILAE). The system architecture can therefore be applied to develop EPR[apos]s for the management of other diseases., Better data management is critical to advance the quality of research activites. An EPR can facilitate this by providing researchers with information where and when needed. Benefits include standardised data entry using international code sets to ensure efficient exchange of information, allowing for interrogation of large data populations. Capturing data at the point of care will improve quality and integrity. Improving efficiency of clinical research is highly dependable on quality clinical information. An EPR can contribute by acting as an interface between clinical care and research. A demonstration of the epilepsy EPR will be available in the exhibition area at the AES., (Supported by Irish Health Research Board.)