Citizen Participation in Health Decision-Making: Past Experience and Future Prospects

Abstract

Every couple of decades governments decide that they need to involve citizens more in public decision-making processes. The significant changes that have occurred over the past decade, including a growing loss of faith in the traditional institutions of government, have once again prompted political decision-makers to explore options for enhanced citizen participation. In the health care sector, reforms occurring during the 1990s were couched in terms such as "enhanced responsiveness," "improved accountability," and "increased citizen participation." In the new millennium, governments and regional health authorities have been relatively silent on this issue. As has been the case in the past, a wide range of opinions exist about what citizen participation is and how governments should proceed. Without either conceptual clarity or practical direction, governments have been slow to articulate what they hope to achieve or how they intend to get there. The purpose of this paper is to examine the concept of citizen participation within the context of a series of basic questions from which decision-makers might draw some policy relevance. Rather than taking a particular disciplinary perspective (i.e. health promotion), the authors have chosen to review a broad spectrum of existing literature to provide a better understanding of what is known about citizen participation, both good and bad. As such, the paper is meant to be a point of departure for an informed discussion of the possibilities for improved citizen participation in health (care) decision-making.

Moving from rational to normative ideologies of control over public involvement: A case of continued managerial dominance

“…In this paper we consider examples from the English National Health Service (NHS), but the need for PI in healthcare is evident globally (Barnes, 1999;Church et al, 2002).…”

“…Whilst the following explanation of organisational arrangements is specific to the English NHS, similar approaches to PI are seen globally in healthcare settings where provider, purchaser and consumer are separated (Barnes et al, 2003;Church et al, 2002).…”

Public involvement policies in health: exploring their conceptual basis

“…Others go further still and interpret public involvement as a 'legitimation' strategy -or 'social technology' -by which the decisions and activities of decision makers in health care can be justified (Harrison and Mort, 1998). They suggest that public involvement initiatives may be used by governments to contain criticism and unrest, thereby deflecting some of the 'political heat' and giving legitimacy to otherwise unpopular policy decisions, especially in the field of rationing (Redden, 1999;Church et al, 2002;Lupton et al, 1997). Recent research, however, provides a more optimistic view, suggesting that public involvement models have evolved away from the 'top-down, paternalistic efforts to extract information from participants' of the past and that they do contribute to improving accountability within health care systems (Abelson et al, 2004;Department of Health, 2004; National Resource Centre for Consumer Participation in Health, 2005).…”

“…Different countries have experimented with initiatives such as public consultation to guide priority setting (Kitzhaber, 1993), regional or community health councils (Frankish et al, 2002), and lay involvement in health boards and citizen juries (Lenaghan et al, 1996;Mooney and Blackwell, 2004). In the current policy context dominated by concerns about quality and accountability, the incorporation of public views into policy making is perceived as a means to restore trust, improve accountability, and secure 'cost-effective decision making' within health care systems (Church et al, 2002). Yet the evidence to support these assumptions remains scarce, partly because many of the current public participation initiatives in place are fairly recent.…”

“…This analysis aims to explore some of the key questions, issues, and conceptual frameworks underpinning public involvement policies in health care, on the basis that this understanding is essential if one wishes to evaluate the contribution of public involvement to the improvement of health system performance (Church et al, 2002). Our ultimate aim is to propose an evaluative framework that may be used to assess the impact of public involvement policies within different health care systems.…”