Paper short abstract:

Using two case studies, we reflect on the relationship between datafication and evidence-based-medicine (EBM). We highlight how the use of big data in health care produces evidence tensions/changes, thus leading to a rethinking of standardisation, patient-centeredness and technology development.

Paper long abstract:

What is the relationship between evidence-based and data-driven health care? In this paper, we address this question from a sociological perspective, exploring the epistemic, institutional and political processes that bring each of these types of health care to bear. We draw on the contrast between two empirical cases studies: reproductive medicine, an area where there is increased use of big, user-led data to obtain regulatory approval and capture markets, and evidence-synthesis communities, and how they have responded to the challenge of big data in the last decade to develop new analytics and review methodologies. We propose a model to understand these transformations that focuses on the shifting configuration between market, standards and democratic legitimacy in contemporary health care. Specifically, we argue that data-driven health care poses challenges to the effective balancing between commercial technology development, standardisation and patient-centeredness in medicine, whereby existing standardisation configurations are challenged and/or adapted in view of rapid market expansion and the participatory promises of user-led data. In doing so, we highlight where tensions arise between evidence-based-medicine (EBM) imperatives and data-driven health care and locate productive convergence zones. We conclude with a discussion of potential implications for the future of EBM in the age of big data.