Patient-reported data and the politics of meaningful data work

Abstract

Patient-reported outcome data have moved from the realm of research to center stage in efforts to provide patient-centered care. In a Danish context, health authorities are seeking to promote and standardize the use of patient-reported outcome data. This involves normative articulations of what counts as meaningful data work in a healthcare system characterized by intensified data-sourcing. Based on ethnographic material, I suggest that an assemblage of actors, both human and technological, has accomplished the articulation of meaningful data work, with patient-reported outcome as being dependent on the active application of data in clinical trajectories-in contrast to supplying data "passively" for secondary use for research or governance. This normative articulation of "Active patient-reported outcome" legitimizes the Danish patient-reported outcome assemblage by showing alignment of the concerns of patients, clinicians and health authorities. At the same time, "Active patient-reported outcome" foreshadows challenges in making data work meaningful in local practice.