Emerging versions of patient involvement with Patient Reported Outcomes

Abstract

It is a central argument in the growing Danish PRO-arena, that a large-scale collection of PRO from patients in the Danish Healthcare system will pave the way for more genuine patient involvement in clinical decision-making, quality management and governance of the health services. In this paper I discuss how patient involvement is being (re)configured when increasingly connected to national visions of participatory healthcare. A central discussion centers on ‘meaningful use’ of patient-generated data promoting patients’ expectations and experiences as a criterion for how to proceed with the national use of PRO. But how do assumptions of what constitutes meaning for patients interact with the kinds of roles that patients are expected to take on with PROtools? What forms of participation are assumed to be meaningful and thus good and which are not? In sketching emerging versions of patient involvement with PRO, I want to point to the need for further empirical exploration of how patients and professionals engage with PRO in specific daily practices and to stimulate a general discussion of all too simple normativities of the so-called ‘participatory turn’ in healthcare. I draw on empirical insights from an ongoing study of establishment of a national initiative for systematic collection of PROs in Denmark.