With data quality issues with administrative claims and medically derived datasets, a dataset derived from a combination of sources may be more effective for research. The purposes of this article is to link an EMR-based data warehouse with state administrative data to study individuals with rare diseases; to describe and compare their characteristics; and to explore research with the data. These methods included subjects with diagnosis codes for one of three rare diseases from the years 2009-2014; Spina Bifida, Muscular Dystrophy, and Fragile X Syndrome. The results from the combined data provides additional information that each dataset, by itself, would not contain. The simultaneous examination of data such as race/ethnicity, physician and other outpatient visit data, charges and payments, and overall utilization was possible in the combined dataset. It is also discussed that combining such datasets can be a useful tool for the study of populations with rare diseases.
Health Information Technology (IT) implementation can fail or meet high levels of user resistance for a variety of reasons, including lack of attention to users' needs and the significant workflow changes induced and required by the technology. End-user satisfaction is a critical factor in health IT implementation. In this paper we describe the process of developing and testing a questionnaire to evaluate health IT implementation, in particular Computerized Provider Order Entry (CPOE) and Electronic Health Record (EHR) technologies. Results showed evidence for the validity and reliability of the questionnaire. The Systems Engineering Initiative for Patient Safety (SEIPS) questionnaire is relatively easy to administer and allows researchers to evaluate different aspects of health IT implementation. Results of this research can be used for benchmarking results of future studies evaluating health IT implementation.
Content-based image retrieval (CBIR) technology has been proposed to benefit not only the management of increasingly large image collections, but also to aid clinical care, biomedical research, and education. Based on a literature review, we conclude that there is widespread enthusiasm for CBIR in the engineering research community, but the application of this technology to solve practical medical problems is a goal yet to be realized. Furthermore, we highlight "gaps" between desired CBIR system functionality and what has been achieved to date, present for illustration a comparative analysis of four state-of-the-art CBIR implementations using the gap approach, and suggest that high-priority gaps to be overcome lie in CBIR interfaces and functionality that better serve the clinical and biomedical research communities.