Abstract
Public participation in health-service management is an increasingly prominent policy internationally. Frequently, though, academic studies have found it marginalized by health professionals who, keen to retain control over decision-making, undermine the legitimacy of involved members of the public, in particular by questioning their representativeness. This paper examines this negotiation of representative legitimacy between staff and involved users by drawing on a qualitative study of service-user involvement in pilot cancer-genetics services recently introduced in England, using interviews, participant observation and documentary analysis. In contrast to the findings of much of the literature, health professionals identified some degree of representative legitimacy in the contributions made by users. However, the ways in which staff and users constructed representativeness diverged significantly. Where staff valued the identities of users as biomedical and lay subjects, users themselves described the legitimacy of their contribution in more expansive terms of knowledge and citizenship. My analysis seeks to show how disputes over representativeness relate not just to a struggle for power according to contrasting group interests, but also to a substantive divergence in understanding of the nature of representativeness in the context of state-orchestrated efforts to increase public participation. This divergence might suggest problems with the enactment of such aspirations in practice; alternatively, however, contestation of representative legitimacy might be understood as reflecting ambiguities in policy-level objectives for participation, which secure implementation by accommodating the divergent constructions of those charged with putting initiatives into practice.
Highlights
As in other countries, the health-care system in Britain has been subject to an increasing drive to engage on a collective level with its public, variously defined as patients, service users, communities, taxpayers and citizens
Public participation is limited by various constraints, including a widely observed reluctance on the part of health professionals and managers to engage with the public and put into practice the outputs of public-involvement processes (Milewa, 1997; Rowe & Shepherd, 2002; Crawford, Rutter & Thelwall, 2003)
The findings presented here derive from qualitative research on service-user involvement in seven pilot cancer-genetics services, which was part of a wider evaluation of a programme of genetics pilots in the English National Health Service (NHS) funded following the genetics white paper (Secretary of State for Health, 2003)
Summary
The health-care system in Britain has been subject to an increasing drive to engage on a collective level with its public, variously defined as patients, service users, communities, taxpayers and citizens. Past research has noted the tendency of professional staff to question the representativeness of involved members of the public as one means of retaining control over the process (Crawford et al, 2003). Rather than being used to legitimize or delegitimize public participants, though, divergent notions of representativeness are deployed in pursuit of differing roles for public participation that reflect different ideas about its function, and the relationship between state governance, professional expertise and the public. This might be understood as the distortion of participation policy by those charged with implementing it. Rather than the distortion of a clear policy mandate, I argue that in common with certain other recent reforms to the British health service, this is a matter of broad, inclusive central guidance which secures implementation, but means that outcomes will always be contingent on local interpretation and negotiation
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