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Data Work in Healthcare: Data and Registry Development in a Big Data Era
In an era where considerable emphasis is placed on the use of big data to solve numerous problems in healthcare, discussion about issues and challenges related to data in general, and big data in particular, are relatively rare in healthcare.
In this presentation, I introduce the concept of ‘data work,’, a term that has never quite been defined in the specialist literature, and remains a slippery notion,” referring not only to "working on data", but also work that is data intensive. Conceptually, ‘data work’ “can facilitate descriptions and analysis of activities and tasks connected with generating, cooking, transforming, representing, comprehending, etc., and can help us identify and bring forward new skills and competences demanded by healthcare professionals and patients alike. It can also help us to identify shifts in resources, authority, and power that this enables and entails.”1 As such, data work can serve as an analytical lens to make visible these kinds of efforts or work, increasingly required to use data in support of patient care in healthcare.
In this presentation, I briefly outline the concept of data work, and discuss its importance in relation to development of registries, pharmacovigilance and secondary use of data. Using our team’s work related to the development of software to support improved documentation of adverse drug events (harmful and unintended consequences of medication use), I outline new areas and competencies required to support the development of robust, meaningful data sets in an era of big data. I argue for an expanded notion of data work—one that includes review of standards at the local, regional, national and international level, and stakeholder relations, as key requisites for development of interoperable systems in healthcare, as well as usable registries and big data sets.
1 Call for Papers, ” Data work in healthcare” Special issue of Health Informatics Journal, 2017.