Data Sharing and the Development of the Cleveland Clinic Statistical Education Data Set Repository

• Activity Number: 435
• Type: Contributed
• Date/Time: Tuesday, August 6, 2013 : 2:00 PM to 3:50 PM
• Sponsor: Section on Teaching of Statistics in the Health Sciences
• Author(s): Amy Nowacki*+
• Companies: Cleveland Clinic
• Keywords: Data Sharing ; Medical Data ; Educational Resource ; Biostatistics ; Teaching Examples

Abstract

Examples are highly sought by both students and teachers, particularly as many statistical instructors aim to engage their students and increase active participation. While simulated datasets are functional, they lack real perspective and the intricacies of actual data. In order to obtain real datasets, the principal investigator of a study must be willing to share the data. Understanding investigators opinions regarding data sharing would thus help elucidate the general lack of data sharing currently exhibited. Presented are the results of a survey designed to gather information regarding willingness to share data, conditions, formats, motivation and concerns. With 76% (56/74) responding favorably to sharing their published data, additionally described is the creation of a new web-based dataset repository which presents raw data from real medical studies and offers (a) a vignette summarizing the study, research question and study design; (b) a data dictionary with clear documentation of variables and codes; (c) a complete citation for the associated study publication; and (d) a variety of data formats compatible with the majority of statistical packages.