The work of composition: Situated articulation of visible and invisible work within patient organisations

Abstract

Patient organisations (POs) play a significant role in the transformation of contemporary health systems. This article concentrates on the mundane and invisible work that enables and maintains POs, including the contextual inscription of such work and its relational becoming with visible practices. Grounded in ethnographic study within the Russian Multiple Sclerosis Society (RuMSS), I analyse how visible and invisible work are articulated in particular situations. Though this analysis, I bring forth the work of composition – the continuous situated work of putting together a PO, with care for heterogeneity of its visible and invisible practices and without an expectation of a predetermined result. The strategically visible work builds up RuMSS expertise, making it a legitimate mediator between different health actors. Meanwhile, the invisible tactics maintain the internal porosity and flexibility of the PO, allowing its members to escape surveillance and achieve efficacy despite strategic limitations. The articulation of these two streams of work within a given situation is a specific invisible practice performed by the RuMSS members – the composition work. This work requires collective and embodied sensitivity to the effects of making work (in)visible in specific time-spaces or chronotopes, and it manifests a modality of care within POs.