title: Characterizing Data Discovery and End-User Computing Needs in Clinical Translational Science.
abstract: In this paper, the authors present the results of a qualitative case-study seeking to characterize data discovery needs and barriers of principal investigators and research support staff in clinical translational science. Several implications for designing and implementing translational research systems have emerged through the authors' analysis. The results also illustrate the benefits of forming early partnerships with scientists to better understand their workflow processes and end-user computing practices in accessing data for research. The authors use this user-centered, iterative development approach to guide the implementation and extension of i2b2, a system they have adapted to support cross-institutional aggregate anonymized clinical data querying. With ongoing evaluation, the goal is to maximize the utility and extension of this system and develop an interface that appropriately fits the swiftly evolving needs of clinical translational scientists.
authors.affiliation: University of Washington, USA.
authors.forename: Parmit K
authors.initials: PK
authors.lastname: Chilana
authors.affiliation: University of Washington, USA.
authors.forename: Elishema
authors.initials: E
authors.lastname: Fishman
authors.affiliation: University of California, Davis, USA.
authors.forename: Estella M
authors.initials: EM
authors.lastname: Geraghty
authors.affiliation: University of Washington, USA.
authors.forename: Peter
authors.initials: P
authors.lastname: Tarczy-Hornoch
authors.affiliation: University of Washington, USA.
authors.forename: Fredric M
authors.initials: FM
authors.lastname: Wolf
authors.affiliation: University of Washington, USA.
authors.forename: Nick R
authors.initials: NR
authors.lastname: Anderson
keywords: Biomedical Research; Clinical Data Discovery; Clinical Translational Science; End-User Scientific Computing; Federated Querying; Patient Information Systems; User Needs
references.citation: Clin Pharmacol Ther. 2007 Jan;81(1):126-8
references.pmid: 17186011
references.citation: J Am Med Inform Assoc. 2004 Mar-Apr;11(2):104-12
references.pmid: 14633936
references.citation: AMIA Annu Symp Proc. 2008 Nov 06;:601-5
references.pmid: 18999158
references.citation: Acad Med. 2009 Jul;84(7):964-70
references.pmid: 19550198
references.citation: Health Aff (Millwood). 2004 Mar-Apr;23(2):116-26
references.pmid: 15046136
references.citation: J Am Med Inform Assoc. 2008 May-Jun;15(3):283-9
references.pmid: 18308986
references.citation: AMIA Annu Symp Proc. 2003;:489-93
references.pmid: 14728221
references.citation: Bioinformatics. 2005 Jan 15;21(2):199-207
references.pmid: 15308539
references.citation: J Biomed Inform. 2005 Feb;38(1):51-60
references.pmid: 15694885
references.citation: Stud Health Technol Inform. 2004;107(Pt 2):818-22
references.pmid: 15360926
references.citation: J Am Med Inform Assoc. 2007 Jul-Aug;14(4):478-88
references.pmid: 17460139