Ultimately, it is for patients that we seek to improve the management of clinical processes. In recent years, the place of patients and consumers of healthcare has shifted. The view of patients as passive receivers of healthcare is being replaced by one of communities as equal partners in decision making about healthcare priorities, contributing their opinions alongside those of bureaucrats and policymakers. Through ‘deliberative democracy’, this involvement takes a number of forms, such as citizens’ juries in which the UK is leading the way (Bristol Primary Health and Social Care 2006, McIver 1998). As a process, deliberative democracy is being used in different ways and for different purposes. In this respect, the chapter discusses the issue of community governance and distinguishes different levels of community involvement: in decision making, principles setting and being consulted. It briefly outlines the historical context of community participation in health and the values and benefits of community participation in setting principles and priority setting.

The chapter examines the principles, purposes and advantages of bringing ‘the community’ more into decision making in healthcare, especially where the question arises of whose values are to be used. The principles on which deliberative democracy might be built are many but foremost are issues of democracy and social justice. The chapter goes on to address the question of what sorts of issues around decision making it is appropriate to bring community values to bear. Deliberative democracy holds out a number of advantages, including greater readiness to comply with policy and hence boost policy effectiveness and efficiency. At a much broader level, it can help to build a greater sense of community and enhance social cohesion.

While different processes exist for eliciting preferences from communities when decisions are being made, in this chapter citizens’ juries are proposed as often the best way forward. Citizens’ juries bring a random selection of citizens together, give them good information and a chance to quiz experts and thereafter discuss and reflect on certain questions about healthcare, against a background of resource constraints. An Australian example of a citizens’ jury is presented and advanced as one that could be replicated to good purpose elsewhere. The way citizens’ juries can be used to aid in setting priorities is outlined.

The chapter concludes by summarising the outcomes of community participation, the advantages it brings and how to manage the plurality of interests and grapple with balancing power in decision making. Finally, the impact of these outcomes is discussed as service objectives and priorities are reconsidered.

This section examines the principles, purposes and advantages in bringing ‘the community’ more into decision making in healthcare, especially regarding the question of the values to be used in healthcare planning and priority setting.

What constitutes community is clearly crucial to this discussion, and it is unfortunate that the concept is not agreed in the literature. The community is not ‘all things to all people’; rather the existence of many different communities needs to be acknowledged. Boswell (1990:5) argues that the exploration of what is meant by community is ‘hindered not by the complete absence of community ideas but by their pervasiveness. In fact, they are all around us but in immature, secondary or emasculated forms. This produces a widespread illusion that they are alive and well, and do not need intellectual effort’. Generally, communities are conceived of as geographically located. This represents the most common usage and the most long-standing usage historically. There are however various other possibilities. Prominent among these are social groupings that can be ethnically, religiously, sports or recreationally based.

In the context of economics, and possibly of other concerns, the issue that separates those who seek more emphasis on community and those of a more individualistic bent (most liberals and certainly neoliberals) is the nature and importance of choice. Bell (2004) argues that the former cast doubt ‘on the view that choice is intrinsically valuable, that a certain moral principle or communal attachment is more valuable simply because it has been chosen following deliberation among alternatives by an individual subject’. Bell makes the further point that ‘the valorization of greed in the Thatcher/Reagan era justified the extension of instrumental considerations governing relationships in the marketplace into spheres previously informed by a sense of uncalculated reciprocity and civil obligation’, that is, what are in essence features of a strong community. Health and healthcare are included in these spheres, which were not previously, but now are often seen as able to be governed by the forces of the marketplace. There has been a move to ‘commodify’ healthcare in the past 20 years or so, with increasing tendencies to see it as a market good. This has been accompanied by a willingness to consider privatisation as the way to deliver healthcare well, where ‘well’ is seen in terms of market efficiency with equity disappearing from view. It would be an exaggeration to suggest that health has become a private good (it is not a good at all if that is defined as something that is capable of being traded); nonetheless the way that health is being seen in public policy places it more at the door of individual responsibility.

Individualism increasingly dominates even within public health services, for example in the measurement of health. Further, the language of the market and market-based managerialism is becoming more pervasive: public healthcare has ‘providers’, ‘consumers’ and ‘business plans’. As the ethos of the MBA takes over, health services as social and community institutions succumb to quantification through performance indicators and worshipping at the altar of QEBM (quantified evidence-based medicine) (Mooney 2004). The notion of a community ‘caring about’ (Little 2000) its members and caring about community health is lost; not because it is absent, but because it is not measurable.

In this chapter, two important issues differentiate a community focus from the individualism of marketplace liberalism. The former allows for, indeed encourages, the inclusion of intangibles such as compassion and cultural diversity, and is more likely to encapsulate the value of process as well as outcomes. Conversely, the individualism of liberalism is concerned with consequences, that is, what is measurable at an individual level, and makes claims to be universal. Marketplace liberalism and certainly neoliberalism are concerned with freedom of choice, with the emphasis on individual choice. An added assumption is that individuals are willing, and able, to exercise consumer sovereignty, indeed that there is a moral goodness about individual choice. This strand can be further split into two parts: the first being about choice per se, and the notion, through choice, of ‘revealed preferences’, that is, that studying individuals’ choices in the marketplace allows us to judge what their preferences and strengths of preferences are; and the second, the fact that this choice is individual choice.

To what extent, though, can choice be only individual when goods are held in common? As Taylor (1989) writes

There is much to discuss in adopting a community perspective of choice and decision making. There are social aspects that a marketeer will choose to ignore or play down. The concepts of freedom are different, especially in the neoliberalism of the marketplace. Oddly, as Taylor hints, freedom is not consciously and overtly valued in the marketplace in the sense that it is not seen as being in need of protection. Rather it is taken for granted, as a given. The market delivers freedom. This is close to being a mantra: a fundamental belief, and as with most fundamental beliefs not open to question – not even subject to question. In a fully fledged market one individual freely exchanges with another individual and they only freely choose to do so if they both believe that they will thereby be better off. The case is proven!

The shaping of the economy follows from this two-person exchange, as the whole economy can be seen as simply a large number of such two-person exchanges all entered into freely. In recent years in the wake of inter alia Thatcher’s famous statement that there is no such thing as a society, the economy and society have become – in neoliberal speech – synonymous, and the word citizen is obsolete as the consumer becomes all that individuals are seen to be. The shaping of society for those who still believe in such an entity can in turn be left to the market and individuals do not have to be concerned about it.

Emphasising community does three things. First, it shifts concern to the shaping of society and a belief that issues around health and healthcare cannot be left to individuals qua individuals. It is citizens as moulded by the society or the community who shape, and, importantly, are shaped by, the society or community. Here, community identity and individual identity are interlocked and interdependent. The distinction between citizen and consumer thus becomes critical. The distinction is well made by McPherson (1977) who claims that

Boswell (1990) makes a separate but related point regarding the distinction between citizens and consumers.

Second, it is based on the assumption that community preferences will not equate with the summation of individuals’ preferences. There are contexts in which individual votes cast in secret can be the way to reach decisions for the group or community, but having people debating and reflecting as a community on issues can come up with different answers and in some instances may be a preferable way of reaching decisions. Third, it brings out as important the idea of establishing what may be best described as the social good of healthcare. This might be simply in terms of ‘outcomes’ such as health, or perhaps through the ‘capabilities’ of Sen (1992); such capabilities being about freedoms to be or to act: in essence, freedoms to function.

Anderson (1993) argues at a general level that democratic institutions allow people to live in the sorts of social conditions where they have the autonomy to express and live their own values in ways with which they are happy. She is derisive of the idea of commodity fetishism where all that is valued by people is available in the marketplace. What is needed, she suggests, is to create institutions where people have voice directly and do not have to operate through so called experts. The same argument can be used more specifically for healthcare consumption and for health in general. Anderson’s ‘institutions of voice’ are particularly important in healthcare if the healthcare system is seen as a social institution. There is very clearly a need for agency – the expert doctor assisting the ill-informed patient – at the level of the doctor–patient relationship. There is a tendency however for this issue to have a spillover effect when it comes to health services as systems. Doctors can become embroiled in discussions about the healthcare system as a system: whether it is adequately funded, what the priorities ought to be in terms of diseases or types of beds, lengths of waiting lists, and so on. Such involvement is not necessarily problematic in itself, but it is too often conducted in terms that suggest doctors are experts at these levels. They are not.

Joan Robinson (1972) makes the point that

The parallels with healthcare are very real. Consumer sovereignty does not exist in healthcare and we can go further and argue that consumers do not want it to exist. It is not, as the standard health economics literature implies with agency, that the agent is there to assist the consumer to make decisions that he or she would make in the market if as well informed as the agent. This role cannot be played by the doctor. We need another type of ‘functionary’ as Robinson suggests (see above) ‘whose career and self-respect depend upon satisfying’ not the consumer but the patient. We have par excellence in healthcare a situation where ‘production will never be responsive to consumer needs as long as the initiative lies with the producer’.

The healthcare sector needs to be responsive not to consumer needs per se but to community needs and preferences. The patient is often heavily dependent on the doctor to act in the role of his or her agent. There is information asymmetry between them. That is accepted by both sides. It is the main reason why we train doctors to such high levels and a reason why we ask them to abide by ethical codes of conduct. It would be grossly inefficient for patients to chase information themselves. Nonetheless, there is an unfortunate tendency to assume that the citizen suffers from information asymmetry in respect of decision making in healthcare and that he or she is willing to hand over decision making at this level to managers and senior doctors. In some instances they may, but they need to be asked, and when the doctors and managers are not willing, there need to be mechanisms available to allow citizens to be involved. This is where deliberative democracy comes into play.

There is a lengthy history of seeking to involve citizens or the community in health service decision making. In 1954, the World Health Organization (1954) argued for such a shift to embrace citizens’ values in health service decision making. Such a move has been frequently endorsed since then (Vuori 1984), most recently by the Romanow Commission in Canada (Romanow 2002). Regardless, Australian governments have been slow to engage citizens in healthcare decision making.

To some extent the expectations of participation depend on the context in which it is set. At its most fundamental, there are two, perhaps three, overarching objectives in healthcare. The simplest is to make the health service ‘better’; the second is to foster democracy and democratic governance; and, while furthering social cohesion and better social institutions is related to the second, it is given a separate heading here because of its potential importance. There are problems with ‘doing better’: What is meant by ‘better’ and how might such betterment be evaluated or measured? ‘Better’ is often interpreted as ‘more efficient’ (Abelson & Eyles 2002