Are structured data structured identically? Investigating the uniformity of pediatric patient data recorded using OpenSDE.

OBJECTIVE: OpenSDE is an application that supports structured recording of narrative patient data to enable use of the data in both clinical practice and clinical research. Reliability and accuracy of collected data are essential for subsequent data use. In this study we analyze the uniformity of data entered with OpenSDE. Our objective is to obtain insight into the consensus and differences of recorded data. METHODS: Three pediatricians transcribed 20 paper patient records using OpenSDE. The transcribed records were compared and all recorded findings were classified into one of six categories of difference. RESULTS: Of all findings 22% were recorded identically; 17% of the findings were recorded differently (predominantly as free text); 61% was omitted, inferred, or in conflict with the paper record. CONCLUSION: The results of this study show that recording patient data using structured data entry does not necessarily lead to uniformly structured data.

Experiences with extracting structured patient data for use in clinical research.

Routinely collected patient data are often recorded as unstructured and ambiguous free text by physicians. These data are, however, also of interest to clinical researchers, for whom they must be clearly defined and preferably coded. We have developed an application to support physicians in recording patient data in a structured, yet expressive manner. The flexible domain-independent data representation and storage approach underlying the application made data extraction for research purposes very complex. The changes that we made to the representation and storage approach to facilitate extraction, without reducing expressiveness for data entry, are presented in this paper, together with the underlying principles of the data extraction tool that we created to enable data extraction for clinical research.