Representativeness, legitimacy and power in public involvement in health-care management

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.

Designing the Spectator Experience

Interaction is increasingly a public affair, taking place in our theatres, galleries, museums, exhibitions and on the city streets. This raises a new design challenge for HCI, questioning how a performer s interaction with a computer experienced is by spectators. We examine examples from art, performance and exhibition design, comparing them according to the extent to which they hide, partially reveal, transform, reveal or even amplify a performerts manipulations. We also examine the effects of these manipulations including movements, gestures and utterances that take place around direct input and output. This comparison reveals four broad design strategies: `secretive,' where manipulations and effects are largely hidden; `expressive,' where they are revealed, enabling the spectator to fully appreciate the performer's interaction; `magical,' where effects are revealed but the manipulations that caused them are hidden; and finally `suspenseful,' where manipulations are apparent, but effects only get revealed when the spectator takes their turn.