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.
目的:数据之旅是描述和询问“数据生命”的一种方式(Bates et al . 2010)。到目前为止,它们已经被用来通过可视化处理和移动数据的路径来阐明数据的移动性。我们想使用数据旅程方法(Eleftheriou et al. 2018)通过注意重复、模式和间隙来比较不同的数据旅程。方法:我们对与21个临床和培训项目相关的43名评估人员、实施者和管理人员进行了定性访谈,这些项目被称为“企业范围倡议”(ewi),是美国国家卫生系统的一部分。我们使用归纳和演绎编码来识别数据旅程的叙述,然后我们使用“泳道”(Collar et al 2012)格式根据这些叙述制作数据旅程地图。结果:与Eleftheriou等人(2018)的工作中的参与者构建了数据基础设施来管理临床数据不同,我们研究中的参与者构建了数据基础设施来评估临床数据。我们创建并比较了两张数据旅程图,这有助于我们探索数据生产和管理方面的差异。在跟踪感兴趣的数据实体的可用路径以及参与者与之交互的过程时,我们注意到相同的信息是如何以不同的方式工作的。结论:研究人员经常必须建立一个新的数据基础设施来响应他们评估工作的独特需求。不同的能力导致不同的程序可以构建,因此他们可以支持什么样的评估工作。在不同项目之间进行直接比较的目标下,对定量值的更有限的关注,以及对评估团队使用的数据旅程的更好描述,可能有助于对复杂结果的证据进行更细致的评估。
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.