Browsing by Subject "Data curation"

Now showing 1 - 5 of 5
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    Central Curation of Glasgow Outcome Scale-Extended Data: Lessons Learned from TRACK-TBI
    (Mary Ann Liebert, 2021) Boase, Kim; Machamer, Joan; Temkin, Nancy R.; Dikmen, Sureyya; Wilson, Lindsay; Nelson, Lindsay D.; Barber, Jason; Bodien, Yelena G.; Giacino, Joseph T.; Markowitz, Amy J.; McCrea, Michael A.; Satris, Gabriela; Stein, Murray B.; Taylor, Sabrina R.; Manley, Geoffrey T.; TRACK-TBI Investigators; Psychiatry, School of Medicine
    The Glasgow Outcome Scale (GOS) in its original or extended (GOSE) form is the most widely used assessment of global disability in traumatic brain injury (TBI) research. Several publications have reported concerns about assessor scoring inconsistencies, but without documentation of contributing factors. We reviewed 6801 GOSE assessments collected longitudinally, across 18 sites in the 5-year, observational Transforming Research and Clinical Knowledge in TBI (TRACK-TBI) study. We recorded error rates (i.e., corrections to a section or an overall rating) based on site assessor documentation and categorized scoring issues, which then informed further training. In cohort 1 (n = 1261; February 2014 to May 2016), 24% of GOSEs had errors identified by central review. In cohort 2 (n = 1130; June 2016 to July 2018), acquired after curation of cohort 1 data, feedback, and further training of site assessors, the error rate was reduced to 10%. GOSE sections associated with the most frequent interpretation and scoring difficulties included whether current functioning represented a change from pre-injury (466 corrected ratings in cohort 1; 62 in cohort 2), defining dependency in the home and community (163 corrections in cohort 1; three in cohort 2) and return to work/school (72 corrections in cohort 1; 35 in cohort 2). These results highlight the importance of central review in improving consistency across sites and over time. Establishing clear scoring criteria, coupled with ongoing guidance and feedback to data collectors, is essential to avoid scoring errors and resultant misclassification, which carry potential to result in "failure" of clinical trials that rely on the GOSE as their primary outcome measure.
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    Data matters: how earth and environmental scientists determine data relevance and reusability
    (2019-05-01) Murillo, Angela P.
    Abstract Purpose – The purpose of this study is to examine the information needs of earth and environmental scientists regarding how they determine data reusability and relevance. Additionally, this study provides strategies for the development of data collections and recommendations for data management and curation for information professionals working alongside researchers. Design/methodology/approach – This study uses a multi-phase mixed-method approach. The test environment is the DataONE data repository. Phase 1 includes a qualitative and quantitative content analysis of deposited data. Phase 2 consists of a quasi-experiment think-aloud study. This paper reports mainly on Phase 2. Findings – This study identifies earth and environmental scientists’ information needs to determine data reusability. The findings include a need for information regarding research methods, instruments and data descriptions when determining data reusability, as well as a restructuring of data abstracts. Additional findings include reorganizing of the data record layout and data citation information. Research limitations/implications – While this study was limited to earth and environmental science data, the findings provide feedback for scientists in other disciplines, as earth and environmental science is a highly interdisciplinary scientific domain that pulls from many disciplines, including biology, ecology and geology, and additionally there has been a significant increase in interdisciplinary research in many scientific fields. Practical implications – The practical implications include concrete feedback to data librarians, data curators and repository managers, as well as other information professionals as to the information needs of scientists reusing data. The suggestions could be implemented to improve consultative practices when working alongside scientists regarding data deposition and data creation. These suggestions could improve policies for data repositories through direct feedback from scientists. These suggestions could be implemented to improve how data repositories are created and what should be considered mandatory information and secondary information to improve the reusability of data. Social implications – By examining the information needs of earth and environmental scientists reusing data, this study provides feedback that could change current practices in data deposition, which ultimately could improve the potentiality of data reuse. Originality/value – While there has been research conducted on data sharing and reuse, this study provides more detailed granularity regarding what information is needed to determine reusability. This study sets itself apart by not focusing on social motivators and demotivators, but by focusing on information provided in a data record.
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    Empowering communities with data: Role of data intermediaries for communities' data utilization
    (2018) Yoon, Ayoung; Copleand, Andrea; McNally, Paula
    Data have significant potential to address current societal problems not only at the federal and state levels, but also in smaller communities, in neighborhoods, and in the lives of individuals. While the proposition for this potential is that data are and will be shared with and reused by and for communities at different levels, not all data are not systematically or routinely shared for reuse with communities due to social, structural and technical infrastructure barriers. Data intermediary organizations can play a significant role in removing existing barriers while unlocking the potential of data for all, particularly for communities with limited human or financial resources, limited access to existing data infrastructures, and underserved populations. Considering the significance of the data intermediary organizations on local communities, this study aims to explore the role of intermediaries that usually facilitate community members/organizations’ data utilization. The findings of this study reveal that data intermediary organizations play four major roles that are crucial in communities’ data utilization: (1) democratizing data, (2) adding value to existing data, (3) enhancing communities’ data literacy, and (4) building communities’ data capacity. This study has several important implications to offer a solution to overcome the challenges of data reuse at the local level.
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    Ensuring research integrity: The role of data management in current crises
    (Association of College & Research Libraries, 2014-12) Coates, Heather L.