Jennifer Van Tiem, Nicole L Johnson, Erin Balkenende, DeShauna Jones, Julia E Friberg Walhof, Emily E Chasco, Jane Moeckli, Kenda S Steffensmeier, Melissa J A Steffen, Kanika Arora, Borsika A Rabin, Heather Schacht Reisinger
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引用次数: 0
Abstract
Objective: Data journeys are a way to describe and interrogate "the life of data" (Bates et al 2010). Thus far, they have been used to clarify the mobile nature of data by visualizing the pathways made by handling and moving data. We wanted to use the data journeys method (Eleftheriou et al. 2018) to compare different data journeys by noticing repetitions, patterns, and gaps.
Methods: We conducted qualitative interviews with 43 evaluators, implementers and administrators associated with 21 clinical and training programs, called "Enterprise-Wide Initiatives" (EWIs) that are part of a national health system in the United States. We used inductive and deductive coding to identify narratives of data journeys, and then we used the "swim lane" (Collar et al 2012) format to make data journey maps based on those narratives.
Results: Unlike the actors in Eleftheriou et al. (2018)'s work, who built a data infrastructure to manage clinical data, the actors in our study built data infrastructures to evaluate clinical data. We created and compared two data journey maps that helped us explore differences in data production and management. In tracing the pathways available to the data entity of interest, and the processes through which the actors interacted with it, we noticed how the same piece of information was made to work in different ways.
Conclusions: Researchers often must build a new data infrastructures to respond to the unique needs of their evaluation work. Differing abilities lead to differences in what programs can build, and consequently what kinds of evaluation work they can support. With the goal of straightforward comparisons across different programs, a more limited focus on quantitative values, and a better description of the data journeys used by the evaluation teams, might facilitate more nuanced assessments of the evidence of complex outcomes.
期刊介绍:
The Journal of Biomedical Informatics reflects a commitment to high-quality original research papers, reviews, and commentaries in the area of biomedical informatics methodology. Although we publish articles motivated by applications in the biomedical sciences (for example, clinical medicine, health care, population health, and translational bioinformatics), the journal emphasizes reports of new methodologies and techniques that have general applicability and that form the basis for the evolving science of biomedical informatics. Articles on medical devices; evaluations of implemented systems (including clinical trials of information technologies); or papers that provide insight into a biological process, a specific disease, or treatment options would generally be more suitable for publication in other venues. Papers on applications of signal processing and image analysis are often more suitable for biomedical engineering journals or other informatics journals, although we do publish papers that emphasize the information management and knowledge representation/modeling issues that arise in the storage and use of biological signals and images. System descriptions are welcome if they illustrate and substantiate the underlying methodology that is the principal focus of the report and an effort is made to address the generalizability and/or range of application of that methodology. Note also that, given the international nature of JBI, papers that deal with specific languages other than English, or with country-specific health systems or approaches, are acceptable for JBI only if they offer generalizable lessons that are relevant to the broad JBI readership, regardless of their country, language, culture, or health system.