Representativeness, legitimacy and power in public involvement in health-service management☆
Introduction
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. However, 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 (Crawford et al., 2003, Milewa, 1997, Rowe and Shepherd, 2002). By seeking to undermine the legitimacy of those involved (Beresford & Campbell, 1994), controlling the course of meetings (Williams, 2004), or selectively implementing the suggestions of public-participation processes (Milewa, Valentine, & Calnan, 1999), professionals and managers are seen to retain control over decision-making processes, or manipulate public participation to ensure that it advances their own interests (Harrison and Mort, 1998, Milewa et al., 1999, Tritter et al., 2003). In order to further their own influence, involved members of the public too are forced to defend their own legitimacy, and so are drawn into a complex discursive game with staff, as each group seeks to assert or undermine the legitimacy of participants (Contandriopoulos, 2004).
This paper seeks to further understanding of this process by drawing on a qualitative study of a particular example of public participation—service-user involvement in cancer-genetics services—and the way in which the bounds of legitimacy of this process are contested by those involved. In particular, the study considers how the ‘representativeness’ (or otherwise) of the involved users is constructed by these parties. 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). The data I present below affirm the importance of the negotiation of representativeness in determining the outcome of public-participation initiatives. 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. However, each divergent interpretation finds justification in the ambiguous and multiple rationales for public participation embodied in policy. Rather than the distortion of a clear policy mandate, then, 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.
Section snippets
Public participation and the struggle for legitimacy
The academic literature notes the importance of representativeness in public-participation initiatives. Frequently, public involvement relies on self-selection or the selection of ‘appropriate’ or acquiescent individuals by health professionals, resulting in exclusion and elitism, and reliance on “the same traditional middle-class cross-section of citizenry to represent the interests of all” (Church et al., 2002, p. 17). Health professionals and managers often share these concerns, and as
Empirical field and methods
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). The cancer-genetics pilots, which were cofunded by Macmillan Cancer Support and the Department of Health (DH), were charged with the task of implementing a rationalized
Selection of involved users
The mandation of user involvement by Macmillan meant that recruiting involved users was an important early task for pilot professionals as they set up services. However, an immediate problem for them was that, on account of the projects' status as new pilots, by definition no ‘users’ in the narrowest sense existed. It fell upon project staff to decide how they wished to deal with this issue and recruit for their user groups. Several described the difficulties they had faced attempting to
Discussion
The divergence of ideas about the legitimate role and contribution of user involvement between staff and users is evident in the previous section. However, despite the lack of electoral or statistical representativeness of the users involved, staff did not use this to undermine their legitimacy. Rather, professionals ascribed a certain degree of representative legitimacy to involved users, on the basis of their laity (vis-à-vis clinical expertise) and their patienthood. For staff, this enabled
Conclusion
In common with previous findings, the role of representativeness and legitimacy claims in determining the course of user involvement in this study was evident. However, substantive as well as instrumental concerns were implicated in this negotiation, with professional staff apparently grappling with the extent to which a degree of representativeness, founded in users' typicality in relation to issues of universal interest to the wider public, could be ascribed to an atypical group of users.
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This paper arises from doctoral study conducted as part of a wider evaluation of NHS genetics service investments. The evaluation was funded by the Department of Health; the doctoral study by the Centre for Social Research in Health and Health Care, University of Nottingham. I would like to acknowledge the helpful advice of my colleagues, Graeme Currie and Rachael Finn, my supervisors, Mark Avis, Tony Fitzpatrick and Mark Learmonth, and others who commented on earlier versions of the paper when presented at the 2007 BSA Medical Sociology Conference, the Department of Health and Human Sciences, University of Essex, and the Institute for Science and Society, University of Nottingham. The suggestions of three anonymous referees have also been most helpful in refining and focusing my ideas. Most of all, I would like to thank the research participants.