Secondary Use of Electronic Clinical Data: Barriers, Facilitators and a Proposed Solution
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The increasing adoption of electronic medical records is producing a massive accumulation of routinelly collected electronic clinical data (ECD). This data can be used not only for direct patient care but for secondary purposes such as clinical research, quality improvement, and public health. However, using clinical data collected for one purpose does not necessarily render it usable for secondary purposes. This dissertation seeks to explore (1) researchers' data needs and whether ECD is fit for use for research purposes, (2) the barriers and facilitators to secondary use faced by clinical researchers, and (3) to propose a solution to help address one of the barriers identified. To do this, this dissertation is composed of three different but interrelated studies. The first one consists of a Delphi process to develop a tool to systematically assess the fitness for use of ECD for research and its subsequent application to a set of clinical data requests. The second study is a qualitative inquiry into the barriers and facilitators to secondary use of clinical data experienced by researchers at the University of Washington, Group Health Research Institute and the Veterans Affairs' Northwest Center for Outcomes Research in Older Adults. The third study describes the development of a system to query clinical relational databases based on temporal abstractions and patterns, which could enable researchers to identify high-level concepts from clinical databases. The results of this dissertation make contributions that should allow us to improve the reutilization of ECD for research purposes.