Enhancing Multi-Center Patient Cohort Studies in the Managing Epilepsy Well (MEW) Network: Integrated Data...

Self-management techniques that assist patients with chronic conditions, such as epilepsy, diabetes, and arthritis, play an important role in managing and caring for their conditions. The US Center for Disease Control and Prevention (CDC)-funded Managing Epilepsy Well (MEW) Network consists of 11 study sites across the US that aims to develop and disseminate self-management techniques for epilepsy patients. Epilepsy affects more than 65 million patients worldwide with serious negative impact on their own as well as their family member's quality of life. Taking advantage of advances in biomedical informatics, the MEW Network has created an integrated database (MEW DB) using a common data model and two tiers of study variables. The MEW DB consists of 1680 patient data records covering a wide range of patient population nationwide. Therefore, there is growing interest in the use of the MEW DB for different cohort query analysis. To address the challenges in: (1) selecting appropriate MEW research studies based on inclusion/exclusion criteria; (2) creating a patient cohort for given research hypothesis; and (3) performing appropriate statistical tests; we have developed an integrated data query and statistical analysis informatics tool called Insight. The Insight platform features an intuitive user interface to support the three phases of study selection, patient cohort creation, and statistical testing with the use of an epilepsy domain ontology to support ontology-driven query expansion. We evaluate the Insight platform using two user evaluation methods of "first click testing" and "user satisfaction survey". In addition, we performed a time performance test of the Insight platform using four patient datasets and three statistical test. The results of the user evaluation show that Insight platform is strongly approved by the users and the results of the time performance show that there is marginal difference in performance as the volume of patient data increases in the MEW DB.