ICISS: Clinical knowledge management system for children with developmental disorders.

Children's Hospital Boston
posted on 03/03/2012

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When monitoring how treatment is progressing for a child with developmental disorders, a clinician may find it difficult to obtain critical information in a timely manner. The patient's caregivers are positioned to provide valuable information to guide future clinical treatment decisions. Questions such as -- how well is therapy working; are there any drug-related side effects; what has worked for similar patients; and what is causing symptom flare ups -- could be answered by parents and teachers. || Drs. Eric Fleegler and Eugenia Chan developed a software system to collect these types of data through user-friendly online software system. The software allows for medication confirmation and side effects reporting, disease symptom surveys and quality of life measures. The data collected are scored automatically and displayed to clinicians in graphical, tabular and narrative formats through an interactive interface. The system is currently in use at Children's Hospital Boston Division of Developmental Medicine and since 2010 over 1500 patients have enrolled in the system. The system has helped reduce average doctor visit time, allowed clinicians to tailor treatment decisions to patient-reported data and enabled better tracking of patient condition over time. The response rate to obtain information from patients, parents and teachers has risen from between 10-30% to now over 50%. The researchers are striving to increase the response rate by continually improving user experience, including introducing a mobile interface in the near future.