Citizen Participation as Political Ritual: Towards a Sociological Theorizing of ‘Health Citizenship’

Abstract

This paper examines citizen participation in health research, where funders increasingly seek to promote and define 'patient and public involvement' (PPI). In England, the focus of our study, government policy articulates a specific set of meanings attached to PPI that fuse patients' rights and responsibilities as citizens, as 'consumers' and as 'lay experts'. However, little is known about the meanings those who take part in PPI activities, attach to this participation. Drawing on ethnographic data of PPI in three clinical areas (stroke, cancer and pre-term birth) we investigate citizen participation in health research as political ritual. We identify tensions between policy-driven and ground-level performance of citizenship, and use ritual theory to show how such tensions are accommodated in participatory structures. We argue that the ritual performance of PPI neutralises the transformational potential of citizen participation, and we draw wider sociological implications for citizen participation beyond the health arena.

Experience as Evidence: The Dialogic Construction of Health Professional Knowledge through Patient Involvement

“…how people use space, what practices they develop). We report additional findings elsewhere (Renedo and Marston, 2015b;Komporozos-Athanasiou and Thompson, 2015;Komporozos-Athanasiou et al, 2016).…”

Public involvement in health research: what does ‘good’ look like in practice?

“…There is a growing body of evaluations of public involvement on impact [24,[26][27][28] and on barriers and levers to impact and partnerships [29,[33][34][35]. Our coproduced self-reflective evaluation focused on implementation of involvement principles.…”

The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?

“…Perhaps the most important criticism of public involvement in health research is that, rather than being empowering or emancipatory, it runs the danger of having precisely the opposite effect. Fudge’s research of stroke survivors’ involvement in service development and research suggests that the way in which the resources of service users are sought through public involvement mechanisms can ultimately inhibit their capacity for protest, and thus, she argues, has the overall effect of containing and quietening radical social movements [ 39 , 73 ] Mechanisms such as time-control, allotted slots for patients to speak, and pre-set agendas served to ensure patient discussions were contained and did not go astray. The ritual structure of meetings that public involvement organisers employed (in terms of orientation, time and content), ensured that public involvement was directed towards researchers’ own productive aims, namely generating grant income and research papers [ 73 ].…”