Measuring (what) Matters – Patient Rated Outcome and the making of experiencing patient publics

• In Event: Well Years, Good Years, Quality Years – Calibrations and Aggregations of Daily Living: Daily Living

Abstract

Patient Rated Outcome Measure (PROM) – originally developed for research on issues such as health related quality of life – are being mobilized widely in Western healthcare systems to ensure that clinical and governance decisions are based on measurements of "what matters to patients" (Coulter 2017) – that is data on patients' actual experiences with the effects of treatment. Specific tools – measures, algorithms, digital platforms – are entering the interactions between patients and healthcare system. Certain – datified and calculative – versions of patients' experiences become central to achieving a number of clinical, managerial and political goals. Exploring a National initiative in Denmark establishing a questionnaire bank and a technical infrastructure for PROM, this paper aims at discussing the epistemological implications of the surveillant assemblage (Prainsack 2018) of PROM. How does this initiative and the related international trends co-constitute the phenomenon of 'patient experience'? Similar to the early twentieth century constitution of an 'attitudinal public' through psychometric measures (Young 2017) and practices of survey making (Igo 2007), we see PROM efforts as experiments in making certain kinds of experiencing patient publics mobilized to steer healthcare toward more sustainable and democratic configurations. However, the multiplicity of aims arising in the development, negotiations and uses of the particular PROM tools reveal tensions between patient experiences that are 'certified' and deemed 'relevant' and those that are not. Hereby we want to contribute to "a pragmatics of health" (Moreira forthcoming) that explores "the complex ecology of standards and measurements" and "how they generate difference and spark the moral imagination" (Ibid).

Authors

• Henriette Langstrup, University of Copenhagen

• Tiago Moreira, Durham University