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) and this objective is less likely to be achieved through technical efficiency than through allocative efficiency. The former is about doing better or doing more with the same resources. This is not something that citizens can be expected to get worked up about or to address with any degree of knowledge. It is a ‘technical’ matter. The public are likely to recognise that and to leave it to the technicians, that is, various healthcare professionals and managers.

Allocative efficiency is where the impact of community consultation is to be felt. It is about maximising benefit with the resources available – often described as ‘doing the right thing’. Abelson & Eyles (2002) argue that ‘public participation may potentially contribute to the effective performance of the health system by helping to create a fully informed citizenry, transparency and, ultimately, accountability, and in this way contribute to the achievement of efficiency goals’. By putting it in these terms Abelson & Eyles miss a key point. Allocative efficiency involves judgments about how best to use resources. This ‘best’ is value laden and switching from one group’s values (say healthcare managers’) to another’s (say citizens’) may well result in a different answer. There might be agreement between the managers and the citizens about the effectiveness of an intervention in, say, providing more care for the elderly living at home or about the effectiveness of another intervention for screening women younger than currently for Down syndrome, but how the two groups judge the relative value of the two effects may differ. This is a major part of what allocative efficiency is about; it is where citizens’ values may lead to a different allocation of resources.

It becomes obvious that trying to evaluate and measure any impact on allocative efficiency using citizens’ values is difficult. The role of the public official or bureaucrat in the absence of citizens’ values should not be to use his or her own values but to try to reflect the values of the community served. Thus, provided that any consultative process manages to elicit genuine community values – and assessing that is hard – then if the process results in some recommendation to alter the allocation of resources from that which the managers would have recommended, there has to be an improvement in allocative efficiency. Thus, in pursuing allocative efficiency, it is clearly better to use direct community values than public officials’ proxies for community values.

Fostering democracy and democratic governance is an accompanying issue. While perhaps instrumental, some writers (Kashefi & Mort 2004) argue for this as an outcome, consequence or benefit in its own right. Kashefi & Mort warn against some of the problems of settling for instrumentality. ‘Incidental’ consultations are deeply mistrusted and can be seen as ‘social control disguised as democratic emancipation’ or ‘simply … ways of deflecting criticisms of mainstream (un)democratic practice’ (Glasner 2001:44). These same authors express concern at ‘the heavy reliance by health and social care agencies on the extractive, incidental outputs of the consultation industry’. Certainly, there are risks associated with public consultation. It can result in a cynical response in attempting to build democratic governance, and this author has experienced such cynicism in facilitating citizens’ juries, albeit from a small minority of jurists. Most enthusiastically endorse the process and express positive feelings (even delight!) at being involved.

Despite the reservations of some observers (e.g. Abelson & Eyles 2002), the experience of this author (e.g. Mooney & Blackwell 2004, Mooney 2007) is that in asking people to put on their citizens’ hats and think and act and judge and express preferences as citizens about some big broad issues such as: What values should underpin your health service? They revel in doing so. Abelson & Eyles’ experience is clearly different; they feel more comfortable in getting citizens to pursue issues in which they have a self-interest. The differences are no doubt real. This author has encouraged citizens to be citizens of whatever jurisdiction was relevant, such as a citizen of the state of Western Australia and not of Perth or Geraldton or Kalgoorlie. Of course they bring their values to the table, but they seem able to be ‘state’ citizens rather than ‘town’ citizens, and most importantly, ‘citizens’ rather than ‘consumers’ or ‘patients’.

Building democratic governance into health services will never be easy. If it is to happen, it involves inter alia somebody somewhere giving up power: politicians or bureaucrats or senior doctors. If the process is to work, the group who must be won over is the politicians. Fortunately they are the least obstructive. They have something to gain by being seen to listen to the voice of the informed citizen. Bureaucrats and senior doctors lose power with no balancing factor. Related to this second point is the role of public participation in building new social institutions and in turn social coherence. (The latter may well be advantageous in the context of the social determinants of health but other than noting that and its potential importance, the point is not taken further here.) There are arguments (Muller 2003) for seeking to build new social institutions at this point in history. In Australia, for example, the recent past and especially the past decade has seen major erosion of some social institutions: the public service has become more politicised; there has been heavy political leaning on the public broadcaster; the independence of the judiciary has been threatened; the structure of the economy has become more neoliberal and the tax base has shrunk with a resultant move to market power and away from democratic government control; and globalisation has seen a shift of power to international organisations, such as the World Trade Organization, and to international controls at the expense of local democratic freedoms.

It would be foolish to suggest that threats to our freedom can be halted by organising a few public consultations on Australian healthcare. There is an argument, however, that to start a trend in that direction could be important. It makes a lot of sense to start the process in health, given the concerns that the public have regarding healthcare at any time, but especially now. There is an interest in the pursuit of social justice in this sector which is perhaps more telling and simply stronger than in many others.

There are all sorts of issues in which and for which the involvement of citizens might come into play. Their involvement can be used for decision making at a national level down to some very local town or village locality. There is no strong argument for ruling out any of these levels in principle. Citizens do need to feel involved. Such feelings are perhaps stronger at a local level but in the author’s experience people in Western Australia have had no problem in acting as citizens at the state level. What is more open for debate is the locus of the decisions and the level or specifics of involvement (Mooney 2007).

Perhaps the best way to use citizens is to get them to inform the ethical base of health service decision making, providing – or as a minimum assisting in providing – the values or principles on which to base healthcare delivery. It might stop at this level and the example given below is about setting principles. How to decide what citizens should do or get involved in is not easy, but there are two key guides. First, the issues to be addressed by citizens must be ones in which they want to get involved. They need to be able to claim some ownership of them. If they do not, then they and those seeking their involvement may be wasting their time. Second, but closely related, the issues ought to be ones that citizens have some knowledge of or can obtain adequate knowledge of without too much effort. Citizens are not well placed to form judgments about which medicines to prescribe in particular circumstances for instance, and the chances are they will not want to anyway.

‘The legitimacy’ of whatever a community consultation comes up with also matters. There are two sides here: the citizens’ and the current decision makers’. First, citizens will be quick to be cynical about being consulted if they feel that they are out of their depth technically or they are being used as pawns or as a means to allow decision makers to put a tick in a box saying ‘community consulted’. Second, there will be many, particularly those who have the property rights, that is, the power over decision making currently, who will be willing to criticise anything that communities come up with: the matters are too complex for ordinary citizens; citizens really don’t want to be involved; these are technical matters; consulting the community is always flawed and biased; whoever leads the process will lead the citizens; and so on. Against this background, the question of legitimacy to decision makers inevitably looms large. Ensuring that citizens are randomly selected, that they are well informed and that they avoid wish-listing by having their preferences constrained within some limited resources helps to reduce criticism of the values they derive. Decision makers are more likely to accept community values if they are about broad value issues than if they get closer to the technical province of, say, medical matters. Such issues as equity, its definition and relative importance are ones that most would concede are the legitimate concern of the public.

Public consultation comes in all sorts of shapes and sizes. Citizens’ juries are the main focus of discussion here; others are consensus conferences, deliberative polling, focus groups, public meetings and forums, and population surveys of various types. Citizens’ juries are preferred because:

Following is an example of one particular citizens’ jury. The example is from Australia, although the principles and practice involved can be usefully applied elsewhere. This jury was held in Busselton, southwest Western Australia in October 2005 and was followed by, and the results used to inform, a public health forum that took place on the succeeding two days. That forum involved 260 people including members of the public who were not randomly selected, health service staff, healthcare consumers, local government staff and councillors and other community representatives. Their task was to look at more operational issues, but beyond mentioning that public forum, no more is made of it here.

After the event the participating citizens were mailed a questionnaire asking them to evaluate various aspects of the jury process. Most responded by mail; four were interviewed by phone. There was thus a 100% response. The general response of the citizens to the jury process was one of satisfaction, approval and enthusiasm. More specifically:

The overall conclusion of the organisers was that the citizens’ jury had been a success. The participants were able to act as citizens and were comfortable to play this role; they believed they do have a role to play in health service decision making; they were able to reach a consensus on a clear set of values and principles; and they felt the process was enjoyable and worthwhile. Perhaps the key findings beyond that are that they wanted more resources for prevention, more for Aboriginal health and more for the mentally ill. Forgoing spending on hospitals and emergency departments was their way of freeing the resources for SWAHS to be able to pay for these extras which they sought.

It is relevant to note that in the subsequent forum the values and principles that the jury developed were overwhelmingly endorsed by the members of the forum.

Experiences with the four citizens’ juries that the author has facilitated in Western Australia suggest that the people on the jury very much like the idea of being given the role of citizens (Mooney 2007). It is worthy of note that they seemed to see this as being rather novel and they embraced the role with great enthusiasm. All the juries were of the view that one of the best aspects of the system was being given the opportunity to sit with other citizens, to be able to express their views in a structured way and to have their voices heard.

The voice of citizens in decision making and priority setting in health is essential because budgets are finite and means must be found to allocate available resources rationally. Community participation in healthcare is advantageous in delivering more efficient healthcare and more broadly in assisting to enhance democracy. For the first, efficiency is more likely to come from allocative efficiency than from operational (i.e. technical) efficiency. It can lead to better allocation of resources in the sense of doing more social good. It can create an environment where there is more debate about the objectives and goals of the system. The sort of community consultation that is likely to prove most fruitful is that which emphasises citizens acting in the role of setting principles and values to underpin healthcare delivery. Here objectives and goals which are too often just assumed or implied can be held up to public scrutiny and if desired changed.

The enhancement of democracy is no small advantage but certainly cannot be achieved if it is only the health sector where citizens’ juries are used. At this level there needs to be a more general consideration of the relationship between the voice of the people and the nature of our social institutions. It is here that examination is required of how to manage the plurality of interests and grapple with balancing power in decision making. Democracy can be thick or thin or anywhere in between. Increasingly we are faced with a thinner and thinner version in Australia. Community consultations used honestly and genuinely to allow the voice of the informed people to be heard more is a way to thicken democracy and our democratic institutions, including in healthcare. Managing clinical processes will only be effective if the ‘right’ healthcare decisions are being made. Healthcare decisions that respond to community needs and preferences are those that this chapter seeks to address.