Usefulness analysis of a Clinical Data Repository design

Abstract

The perceived usefulness of a Clinical Data Repository (CDR) prototype in a hospital setting was assessed by clinicians to determine whether they would find it helpful for their clinical and research work. The CDR automatically collects and stores clinical data in real time from patient monitoring devices, clinical information systems, laboratory systems, and the Health Records Department in a de-identified, easily extractable format for secondary uses. A secure online survey was distributed to physicians, research institute investigators, and research institute coordinators at the Children's Hospital of Eastern Ontario (CHEO) through email. According to the survey responses, participants felt the CDR was a useful tool, showed interest in it, and thought it would be important to have for future work. To illustrate how the CDR could be used in a clinical setting we have provided a sample clinical application; a tool for engaging physicians and parents in discussion about the clinical progress and prognosis of infants in the Neonatal Intensive Care Unit (NICU).