Infrastructuring experience: what matters in patient-reported outcome data measurement?

Abstract

Patient-Reported Outcome (PRO) data are being widely mobilised as a means to implement clinical and governance decision-making systems based on measurement of "what matters to patients". Little is known, however, of how these—datified and calculative—versions of patients' embodied experiences become integrated in healthcare systems to achieve clinical, managerial and political goals. Drawing on data collected on a Danish national initiative to establish a questionnaire bank and a technical infrastructure for PRO data, this paper explores the epistemic and moral tensions of emerging infrastructures for patient-reported data. Our data reveals that those involved in crafting and developing the Danish PRO system seek to encode ‘patient experience’ in the Danish healthcare system by infrastructuring for the clinic, by infrastructuring for the organisation, and by infrastructuring for participation. The infrastructuring efforts in each of these domains involve tensions as the emerging phenomenon of PRO rubs up against existing ways of working clinically and of enhancing and evaluating the quality of clinical care. Thus, while we share critical social science concern about standardisation of patient experience, we show here how those concerns are already pragmatically present in the infrastructuring efforts that patients, clinicians and administrators engage in.