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.

Whose health, whose care, whose say? Some comments on public involvement in new NHS commissioning arrangements

Recent health policy in England has demanded greater involvement of patients and the public in the commissioning of health and social care services. Public involvement is seen as a means of driving up service quality, reducing health inequalities and achieving value in commissioning decisions. This paper presents a summary and analysis of the forms that public involvement in commissioning are to take, along with empirical analysis from a qualitative study of service-user involvement. It is argued that the diversity of constituencies covered by the notion of ‘public involvement’, and the breadth of aims that public involvement is expected to achieve, require careful disaggregation. Public involvement in commissioning may encompass a variety of interest groups, whose inputs may include population needs assessment, evaluation of service quality, advocacy of the interests of a particular patient group or service, or a combination of all of these. Each of these roles may be legitimate, but there are significant tensions between them. The extent to which the structures for public involvement proposed recognize these possible tensions is arguably limited. Notably, new Local Involvement Networks (LINks), which will feed into commissioning decisions, are set as the arbiters of these different interests, a demanding role which will require considerable skill, tenacity and robustness if it is to be fulfilled effectively.