Data governance spaces: The case of a national digital service for personal health data

Abstract

This paper investigates data governance empirically by conducting a retrospective study of the ten-year evolution of a national digital service for personal health data in Norway. We show how data governance unfolds over time as data become shared and itinerant across multiple actors. Building on our findings, we introduce the concept of data governance spaces to refer to the authorized relationships among multiple actors, which specify the boundaries of decision-making authority, rights, roles, and responsibilities around data processing. We contribute to the literature on data governance by distinguishing between a) authority multiplication, where data are handed over to other actors to serve diverse purposes triggering horizontal dynamics, and b) actor subordination, where authorities delegate data handling for uniform purposes triggering vertical dynamics. Overall, the paper extends prior research by showing how data governance unfolds beyond intra-, or inter-organizational boundaries and shifts attention to data's pivotal role, and the purposes for which data are collected, shared or used across multiple actors.