Translational Researchers’ Perceptions of Data Management Practices and Data Curation Needs: Findings from a Focus Group in an Academic Health Sciences Library

Abstract

How translational researchers use data is becoming an important support function for librariesto understand. Libraries’ roles in this increasingly complex area of Web librarianship are often unclearly defined. The authors conducted two focus groups with physicians and researchers at an academic medical center, the UCLA David Geffen School of Medicine, to gain a better understanding of the current state of data use and data management practices among translational researchers. Data management practices varied widely among departments, disciplines, and research centers, but common areas of concern important to Web librarianship included privacy, data access, and data stewardship. The results provided qualitative information about creating, managing, maintaining, and validating data in clinical and research environments, and challenges working with clinical research data in universities. These results inform current practices around data access, data sharing, and privacy of research participant data. Libraries can build on existing Web skills by instructing users how to find open source and commercial data sets, partnering to establish and implement improved data collection and archiving practices, and teaching principles of ethical data use.