‘Data saves lives’: Ideational-material drivers of health data journeys in the UK

Abstract

In this paper, we bring together the concepts of data valences and data journeys to examine how ideational and material factors work together to shape the movement of health data from the UK healthcare sector to universities for reuse in research. Specifically, we focus on the interaction of university-based researchers’ constructs about data with the material conditions of health data circulation in the UK and how these dynamics drive greater circulation of health data through the data sharing infrastructure. Building on our empirical research, we identify four data valences or expectations about data present in the discourses of university-based researchers – vanguard, discovery, truthiness and actionability – and three material factors – investment in data, infrastructure and labour. We argue that the interaction of these factors has created a favourable environment for making data flow from the healthcare sector into the hands of university-based researchers. This work contributes to a better understanding of why health data reuse practices are expanding and being sustained, and it challenges previous health data reuse research that treats the drivers shaping data flows as self-evident or already determined.