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Exploring Data Curation Work in a National Clinical Registry

Title: Exploring Data Curation Work in a National Clinical Registry: A Case Study of the CathPCI Registry®.
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Name(s): von Eberstein, Alison M., author
Burnett, Kathleen M. (Kathleen Marie), professor directing dissertation
Glueckauf, Robert L., university representative
Stvilia, Besiki, committee member
Marty, Paul F., committee member
Florida State University, degree granting institution
College of Communication and Information, degree granting college
School of Information, degree granting department
Type of Resource: text
Genre: Text
Issuance: monographic
Date Issued: 2016
Publisher: Florida State University
Place of Publication: Tallahassee, Florida
Physical Form: computer
online resource
Extent: 1 online resource (438 pages)
Language(s): English
Abstract/Description: Given the expanding use of clinical registries for a spectrum of uses that range from quality improvement, clinical research, identification of the most effective treatments, post market surveillance of drugs and medical equipment, to the design of clinical trials for potential therapies, there is wide consensus that data quality undergirds the value of clinical registries for decision making (Davis, Nolan, Woodcock & Estabrook, 1999). A growing body of IS research is aimed at studying data practices to support data curation and management in the milieu of big data, e-Health and e-Science initiatives. The products of such research enable comparisons of data practices across scientific disciplines and communities by characterizing the data and the data-related activities specific to a domain and context. Through the lens of Stvilia, Gasser, Twidale, & Smith’s (2007) generalizable Quality Assessment Framework, this exploratory case study examined the work organization and data practices of data curators for the American College of Cardiology (ACC)-National Cardiac Data Registry (NCDR) CathPCI Registry®, an observational, clinical outcomes registry and one of the largest, best established US cardiovascular registries. Goals of this pragmatic, exploratory case study included: (1) extension of investigations conducted by Besiki Stvilia (2001, 2006, 2007, 2008, 2010, 2014, 2015), Hong Huang (2009, 2010) and Shuheng Wu (2014), through operationalization of Stvilia et al.’s (2007) Quality Assessment Framework, (2) exploration of the data curation practices and work organization in a clinical cardiac registry at the facility level, and (3) description of the CathPCI Registry activity system for post-dissertation development of a context-sensitive model of data quality criteria in a clinical cardiac registry, which ultimately, can facilitate performance outcomes assessment and clinical research to advance the quality of patient care. The study supplies a depiction of typical CathPCI Registry data curation work that includes a conceptualization of the local Registry data quality structure. Conceptualization of data quality structure entails a typology of Registry data quality problems and corresponding quality assurance actions. The findings are embodied in a description of data work organization of the CathPCI Registry, including: roles of human, hospital-based data curators for the Registry; their data curation work practices; division of labor within the community of practice; types and sources of data quality problems encountered in curators’ use of the CathPCI Registry; some of the tools and strategies data curators use to manage data and to detect and resolve data quality problems; rules governing data curation work; and data curators’ perceptions about Registry data quality.
Identifier: FSU_2016SU_vonEberstein_fsu_0071E_13036 (IID)
Submitted Note: A Dissertation submitted to the School of Information in partial fulfillment of the requirements for the degree of Doctor of Philosophy.
Degree Awarded: Spring Semester 2016.
Date of Defense: April 28, 2016.
Keywords: CathPCI Registry, clinical registries, data quality, information quality, patient registries, quality
Bibliography Note: Includes bibliographical references.
Advisory Committee: Kathleen Burnett, Professor Directing Dissertation; Robert L. Glueckauf, University Representative; Besiki Stvilia, Committee Member; Paul F. Marty, Committee Member.
Subject(s): Information science
Persistent Link to This Record: http://purl.flvc.org/fsu/fd/FSU_2016SU_vonEberstein_fsu_0071E_13036
Owner Institution: FSU

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Von Eberstein, A. M. (2016). Exploring Data Curation Work in a National Clinical Registry: A Case Study of the CathPCI Registry®. Retrieved from http://purl.flvc.org/fsu/fd/FSU_2016SU_vonEberstein_fsu_0071E_13036