Deena White. Handbook of Social Studies in Health and Medicine. Editor: Gary L Albrecht, Ray Fitzpatrick, Susan C Scrimshaw. Sage Publications, 2000.
Citizen participation has been a recurrent theme in health-care policy, planning, and organization since the heady days of popular protest and community action in the 1960s. It has advanced in waves, surging with optimism with each new policy endeavor and sinking in disillusionment before the next. It has emerged in a multitude of different of forms: direct participation on decision-making boards and local councils, various levels and forms of public consultation, resource mobilization strategies such as partnerships between lay and public agencies, and indirect forms of participation such as needs or satisfaction surveys. What these diverse activities share in common is not obvious, but they do all involve an invitation to groups with a stake in the health-care system to contribute opinions, information, experience, or other resources to the administration of that system.
The meaning of the term ‘participation’ is considered so self-evident that it is rarely defined in the abundant literature addressing consumer and community participation in the health field. This same literature, however, often goes on to insist upon the vagueness of the term as it is used in policy, the complex issues it obscures, the misunderstandings it provokes and the pitfalls it conceals. Despite this, its value for health-care decision making and quality assurance is usually taken for granted. Where ‘exit,’ or the chance to takes one’s health problems elsewhere, is not a viable alternative, due to a public monopoly on health services, ‘voice’ is typically seen as an equivalent, democratic expression of preferences and expectations that can help ensure accountability to the users or consumers of health-care services (Croft and Beresford 1989). From this perspective, participation is valued in and of itself, as a democratic ideal. The emphasis is on the processes by which stakeholders, such as service users, as well as physicians and other health-care workers contribute to administrative and managerial decisions.
Participatory democracy is not everyone’s democratic ideal, however. It is viewed askance by many by who fear that ‘popular opinion’ is a poor basis on which to make collective healthcare decisions, and that the diversity of opinions and interests on health-care issues would quickly degenerate into conflict and instability (Donovan and Coast 1996; Grant 1989). Mainstream political theorists contend that, far more important to democracy than direct participation in decision making is the right to opposition and the assurance of administrative accountability to the public (Pateman 1970). Participation in the health field, however, tends to be more oriented towards consensus and confirmation than debate and opposition, and more concerned with the recruitment and management of participants than with accountability to them or their constituencies (Steckler and Herzog 1979).
If participation in the health field rarely conforms to any democratic ideal, it may still have importance as a means to promote particular objectives that different participants may hold to be of value. For example, participation in priority-setting exercises, or in patient satisfaction or clinical outcome surveys, could lead to substantive effects that would not have been produced if administrators, managers, or physicians simply followed their own counsel. Curiously, however, the vast and eclectic literature on participation displays a common feature: a singular lack of concern with outcomes, or the effectiveness of participation. Now, the organization and management of participation, in any of its diverse forms, is a costly process for governments and administrators in terms of both financial expense and efficiency. In the context of fiscal constraints that have been menacing health systems throughout the West since the early 1980s and the recent surge of interest in evidence-based practice, the absence of any outward preoccupation with the results of participation is odd. It raises the following question: why are governments and other authorities determined to invest and reinvest in consumer and community participation in spite of the relative lack of evidence, one way or another, regarding its impact?
This chapter aims to explore this question by analyzing what we have learned about both the processes and effects of participation over the last 30 years. A previous review of the literature on participation in the health field (Bates 1983) concluded that democratic participation is generally a failure for three principal reasons: because of administrative constraints such as funding and deadlines, because those who participate tend to represent élite interests even within the lay population, and because administrators use participation for their own ends. Before taking up these issues, this chapter will discuss the context within which consumer and community participation emerged as a valued health administration practice, as well as a number of frameworks for analyzing it. The most striking feature of these frameworks is the extent to which they focus on power relations. Themes such as ‘empowerment’ (Beecker et al. 1998; Croft and Beresford 1989; Watt and Rodmell 1988;), the distinction between ‘bottom-up’ and ‘top-down’ participation (Lipsky and Lounds 1976; Lomas and Veenstra 1995; Milewa et al. 1998; White 1993a; White et al. 1994), and citizen or consumer control (Checkoway 1982a, 1982b; Goold 1996; Paap 1978) dominate the analytic literature, reinforcing the concern with process over outcomes.
Expert and Lay Participation
In the health field, stakeholders include doctors, nurses, and other health-care workers, politicians, administrators, managers, and researchers, pharmaceutical, insurance, and health maintenance enterprises, and finally, patients, and potential service users. Each has a different perspective from which they view effective health-care strategies. They also have different stakes or interests in the system: some depend on it not only to resolve their health problems but also for their livelihood. Many of these groups are organized into both formal and informal associations that represent their interests, and that play either an up-front or backstage role in their participation in the health system. Because not all social groups are equally well organized and do not all represent or express themselves in similar ways, not all are on an equal footing. Certain participants (or groups of participants) are more likely than others to have their agendas prevail. In this light, the view of participation as the democratic expression of the ‘public will’ is an overly abstract notion that is inadequate to capture the diversity of participants, and the asymmetry of participation in real world situations.
Metaphorically, we might refer to the relative power of health system ‘insiders,’ whose livelihood is assured by that system, who circulate in an arena of health-care decisions and actions, and who have some access to the human, financial, informational, and organizational resources that are concentrated there. By comparison, ‘outsiders,’ or peripheral participants, are those whose participation tends to be more intermittent, passive, and dependent on the resources and structures furnished by insiders, and whose autonomous impact on decisions and actions is limited. The definitions of ‘insiders’ and ‘outsiders’ are neither arbitrary nor fixed. Some of those who are decidedly insiders today, such as health administrators, were once considered outsiders, or ‘laymen’ [sic] with no right or expertise to interfere in the preserve of the medical profession (Horrobin 1977). Physicians themselves once had to compete with all sorts of alternative healers and in no way controlled the medical arena as they do today (Toth 1996). Now, health administrators and health economists have joined physicians in the core arenas of Western health systems. The current outsiders constitute an immensely broad, vague category of people called citizens, consumers, communities, the public or simply ‘lay participants,’ with nothing in common but the fact that they are not health system insiders.
There are striking contrasts between the simultaneous rise of a discourse on consumer and community participation and the process by which previous ‘laymen,’ such as administrators, managers, and economists, came to permeate the core arenas of the health-care delivery system. First, when administrators began to surface as the new health system decision makers, physicians resisted their rise to power, considering it an encroachment and interference in an area in which they had no pertinent expertise. In contrast, consumer or community participation has been invited, if not invented by those very administrators who are now central to the system. This means that insiders determine the rules and structures through which outsiders can approach the decision-making arenas, as well as the resources to which they have access, once there.
Second, the access of physicians, administrators, and other experts to the decision-making arena had been based on the perceived pertinence of their expertise in an increasingly complex, costly, and public health system. In contrast, ordinary citizens or consumers have no recognized expertise (Stacey 1994). Their participation always risks descending into the realm of the ‘gratuitous,’ where it would warrant no more than a polite interest in lay perspectives and beliefs (Popay and Williams 1996). Because their expertise in health matters is not yet established, and because their participation is engineered by administrators and other insiders, lay participants remain firmly ensconced at the periphery of health-care, decision-making arenas. This may explain why the concept of control has been one of the most salient issues for those who have analyzed lay participation in the health-care domain.
Why Lay Participation?
The preceding observations have so far begged the question of why core actors in health systems, including politicians, administrators, managers, and physicians, have decided that lay people ought to be drawn into a more active role in the system. An examination of the history of lay participation suggests three converging factors to explain the phenomenon: the ideology of the community health movement, the consolidation of the welfare state, and the emergence of a populist ethic supporting direct action, all of which emerged during the 1960s and early 1970s. Each provided a motive for encouraging lay participation in health-care decision making at the political, administrative, and organizational levels.
Social development policies for the Third World have long called for the rational organization of health-care delivery, with a focus on primary care and community involvement. The concept of community involvement came to emphasize the value of lay knowledge and practices and the active participation of local populations in service delivery and organization, as well as the need for health education and community organization to empower communities to handle these responsibilities (Jewkes and Murcott 1998; Midgley 1986). The concept of community empowerment was harnessed to this tradition (Rappaport 1981), but the community health movement was clearly not a grassroots movement. It was inspired and promoted by professional community health organizers, typically from developed countries, as a means of mobilizing indigenous human resources and knowledge necessary to implement effective primary health-care programs on a shoestring budget (Zakus 1998). Nor was the community health approach a plot to exploit lay resources. It rather represented a genuine belief in the socially and medically therapeutic value of participation for the lay participants themselves. It referred to the sense of control that would ostensibly flow from lay people taking active responsibility for their own health at both the individual and community levels (Jewkes and Murcott 1998).
When the community health movement penetrated Western societies, its concern with the mobilization of lay resources and primary health care translated into the promotion of lifestyle changes, self-help, and health advocacy, while its experience with health-care planning was applied to the rationalization of increasingly costly Western health-care systems (Rose 1990; Watt and Rodmell 1988). The inspiration for the movement lay in bodies of knowledge developed and controlled by community health experts who, in many cases, made their way into government, administrative or other public sector positions in expanding welfare states. Indeed, postwar welfare state expansion and consolidation provided a fertile ground for the institutionalization of many community health principles and practices. It was also a second major contributing factor to the promotion of lay participation as one element of a rationalizing triumvirate that included decentralization, health planning, and eventually, prevention and community-based care.
Together, decentralization, health planning, and lay participation framed the establishment of health administration as a distinct area of expertise, and paved the way for the entry of health administrators into the core decision-making arena of health systems during the 1960s and early 1970s. Their mandate, in brief, was the coordination of health systems in the public interest. This meant, amongst other objectives, establishing countervailing forces against the constant pressure towards rising costs that were considered inherent in the professional ambitions of the medical establishment that controlled the domain at the time. In this context, the community health approach was seen to hold promise for a more rational health-care system that valued the expressed interests of patients and potential service users above competing professional interests such high-technology work environments or intensive therapies.
A third impetus for lay participation during the same era was the popular preoccupation with protest and dissent, direct action and anti-establishment sentiment. The medical establishment in particular was severely attacked during this period as an oppressive institution. First targeted was psychiatry, which was reinterpreted as an institutionalized form of social control. Indeed, the very status of mental illness as an ‘illness’ was challenged by both social scientists and radical psychiatrists (Cooper 1967; Foucault 1961; Goffman 1961; Szasz 1961). This wave was followed by a vast literature which was critical of medicine in general as a form of social control (Doyal 1979; B. Ehrenreich 1970; J. Ehrenreich 1978; Foucault 1975; Freidson 1970; Illich 1976), particularly from a feminist perspective (Ehrenreich and English 1973), and of the medicalization of more and more aspects of Western society (Conrad 1976, 1979; Zola 1972). In this overall context of cultural opposition, the need to legitimate ambitious welfare state reforms and the reorganization of public intervention to a politically engaged public was an important motivation in calling for lay participation, not only in the health arena, but also in economic development, education, and urban renewal. Such exercises in legitimation may well have contributed to the dispersion of radical anti-establishment movements by the end of the 1970s.
In Canada, Quebec’s CLSCs (local community health and social service centers) provide an instructive example of the convergence of these administrative motives for inviting lay participation in the health field. CLSCs were introduced in 1971 as part of a thoroughly reformed and rationalized system of health delivery, just as universal health insurance and other important welfare policies were also being adopted in the province. The mandate of the CLSCs was to provide primary socio-health care, including both clinical and health promotion services, in small, local, multidisciplinary organizations with a high degree of citizen participation. The network of CLSCs was to be the world prototype of a modern health system built around community health principals. A majority of seats on the board of directors of each CLSC was reserved for local service users, while the rest were reserved for the avant-garde professionals that staffed the organizations.
The CLSC concept had in large part been a response to the emergence of radical community action groups in Quebec that, during the 1960s, were setting up free clinics in working-class and inner-city neighborhoods, raising the consciousness of local populations. These groups had been aggressively advocating greater public investment in health care and greater sensitivity to users’ needs. The first CLSCs were established by the government in partnership with existing local community action groups. The roots of the CLSCs, therefore, lay partly in government efforts to appease radical demands by having the grassroots participate in their establishment and operation, and partly in efforts to rationalize health care by substituting local centers of low-tech expertise at the center of the system, in place of the hospital and the medical specialist’s office. The user-controlled CLSC clearly represented the intersection of community health ideals, grassroots action, and rational welfare state development and management.
The story of the early years of the CLSCs also illustrates many of the vexing issues intimately associated with lay participation. The CLSC has proven a great disappointment with respect to improving system efficiency, controlling medical power, and increasing grassroots participation. Doctors simply boycotted the CLSCs, with the effect of relegating them, to this very day, to a relatively marginal public health as opposed to primary health role within the system. However, this posed little problem for the avant-garde community health professionals who saw the CLSCs mainly as vehicles for the promotion of their own particular expertise in community mobilization and health promotion. This unfortunately did not coincide with the expectations of CLSC lay board members, who expressed more traditional needs such as improved access to existing services.
The first five years of CLSC development were ridden by internal conflict. On the one side were the militant lay board members who had been instrumental in setting up the CLSCs in their communities and who expected to retain control, especially with their hard-won board majority. On the other side were the idealistic professionals eager to implement their own radically new forms of community health practice. While lay participation was limited to board membership, professional participation permeated the operational level of the CLSCs, and furthermore, created concentrated, material interests for the staff in maintaining control over the organizations. They were able to determine the flow of information to the board, as well as the extent to which board directives were implemented. Furthermore, the professional staff also entered into conflict with CLSC administrators as they undertook the arduous process of union certification during a period characterized by labor unrest. In this climate of conflict and instability, the professionals’ position in the CLSCs became increasingly dominant, while lay participation dropped off, leaving board seats empty.
Five years later, community action groups were no longer a feature of Quebec’s urban landscape; the free clinics had all but disappeared with the introduction of CLSCs. Independent lay participation in the CLSCs was becoming alienated, and professional community organization had become a central feature of CLSC practice. To restore some level of stability and a modicum of legitimacy to its showpiece organizations, the government declared that the role of government-appointed CLSC administrators would be reinforced, that the establishment of future CLSCs would not depend on the grassroots participation of local citizens’ groups, and that the provision of primary health and social services would take precedence over community organization. Perhaps most interesting was the government’s explanation for retreating from its initial, close partnership with both grassroots groups and ideological community health professionals:
I don’t think you are expecting excuses from me for the government’s control over CLSCs. This control is the normal and inseparable counterpart of our responsibilities, which are challenged much less frequently… The state defines the goals of a program like the CLSCs and provides the means for carrying them out. The responsibility delegated by the state concerns the way these means are used to achieve the goals … Participation must be seen in this context. Let there be no confusion: participation does not mean that the state abdicates its role; it merely shares it… (C. Forget, Minister of Social Affairs, 1975, quoted in Lesemann 1984: 260).
Quebec’s disappointing experience with participation was not unique. In the United States, the Comprehensive Health Planning Councils instituted in 1966, in which both consumers and providers were represented, and their 1974 replacements the Health Systems Agencies (HSAs), with consumer majorities on their boards, had both been abandoned by the 1980s. In the United Kingdom, Community Health Councils (CHCs), established in 1974 to represent consumer views and interests within the National Health Service, are still a feature of the system, but have never, on the whole, presented a challenge to the traditional health establishment. Despite this discouraging history, support for lay participation has spread and its motives and forms have diversified since the 1980s. It is rapidly becoming an institutionalized feature of Western health organizations and planning bodies.
Frameworks for the Analysis of Participation
Since the 1980s the spaces and motives for lay participation have broadened and become of increasing interest to policy makers. A whole host of new modes and uses for lay participation have emerged. These range from community needs assessments and patient evaluations of clinical outcomes to national or regional priority-setting and resource allocation decisions. While some empirical evidence of the relative success or failure of different participation strategies has accumulated over the years, usually from single case studies, there is far less than might be expected given the total amount of writing that has been published on the subject. Moreover, it is not clear how to make sense of the research results in such a way as to learn specific lessons from more than three decades of experience.
Diversification makes it difficult to establish a common conceptual or theoretical basis for conducting a meta-analysis of study results on consumer and community participation, one that would be meaningful for all objectives, methods, and degrees of participation. There is no lack of conceptual frameworks suggested in the literature, although they have not often been applied in empirical case studies. Most such conceptual systems have focused on a single issue: the extent of lay control over decision making. Do consumers or communities gain access to core decision-making circles, entailing at least a partial transfer of power from those who already control that arena? Or is participation reduced to a data-collecting exercise, a one-way transfer of information from users to administrators, which further empowers core actors by increasing their knowledge base?
The best-known conceptual framework for the analysis of lay participation is Arnstein’s (1969) eight-rung ladder of participation. Arnstein ‘rates’ participation in terms of the degree of control held by lay actors. For Arnstein, what sometimes goes by the name of participation is in reality ‘therapy’ or ‘manipulation,’ where lay people are encouraged to participate ‘for their own good’ or because of the resources they can provide in the form of information, services, or public relations. Some community health programs and strategies concerned with consumer satisfaction risk falling into these categories, which Arnstein places at the very bottom of her ladder. The middle rungs consider various two-way communication arrangements between insiders and outsiders, from ‘information’ and ‘consultation,’ with little power sharing, to ‘placation’ and ‘partnership,’ where some accountability is implied. The top rungs are reserved for ‘delegated power’ and ‘user control.’ Arnstein’s ladder has inspired other similar approaches such as Feingold’s (1977) five-rung version and Brachat’s (1994) evolutionary interpretation of the model in which the practices associated with participation are perceived to have moved up the ladder over the years.
Equally concerned with the continuum of control, Webster (1995) suggests an analysis of participation that focuses on the rhetoric of consumerism and empowerment, concepts at the center of Thatcher’s reform of the National Health Service in Britain. Webster argues that the logic of the consumer empowerment argument is plagued by confusion over who the ‘consumers’ of health care are, and therefore, who was empowered by the quasi-market reform. The actual consumers or decision makers are local or regional administrators and groups of general practitioners who purchase hospitals’ and specialists’ services (or in the American system, private insurance companies and health maintenance organizations, or HMOs). Patients, potential service users, communities, and the public remain entirely outside the realm of consumer-like decisions. Lay access to information is not significantly improved, and experts of various sorts are still making choices on behalf of beneficiaries. Webster concludes that it is not patients who have been empowered by the shift towards consumerism, but health system insiders (see also Milewa et al. 1998).
There are more dimensions to participation than user control or empowerment, however. For example, Charles and DeMaio (1992) devised a three dimensional framework that considers the level of user control and the domain of action (treatment, planning, or policy), as well as ‘role perspective’ (are participants expected to take the perspective of particular lay groups, or rather of the broader ‘public’ or ‘community’ good?). A similar framework was developed by White (1993b) in the context of a study of the ‘communitarization’ of mental health services. Here, each domain of action is depicted in the form of a continuum stretching from local, lay control, based on experiential knowledge, to centralized, administrative, and professional control, based on scientific knowledge. However, none of these frameworks is useful for conducting a meta-analysis of existing studies of participation which tend to divide themselves into camps, each treating only one or another dimension of a process that is clearly multidimensional.
One fault line relates to the objectives of lay participation. As we have seen, lay participation is sometimes understood as being an end in itself primarily concerned with democratic process and empowerment, and sometimes as a means to substantive ends related to health-care delivery, such as cost control or improved service access. Usually, only one or the other is addressed, although it becomes apparent that the two are inevitably linked and that this very linkage creates serious tensions around lay participation. A second fault line relates to the question of representation, and how the category of ‘participant’ is constituted. Lay participants are seen by some to represent some amorphous, undifferentiated ‘public’ or aggregation of individuals, and by others to represent a collectivity, community, or constituency of lay interests. This issue mirrors Charles and DeMaio’s concept of ‘role position,’ but raises more sharply the question of accountability. Collective representation with accountability to an outside constituency, such as an advocacy group or patients’ association, is shown to enhance not only democratic process but also the efficacy of lay participation (Berry 1988; Beeker et al. 1998). On the other hand, it hampers administrative efficiency.
Finally, there is a clear divide in the literature between the perception of participation as a means of drawing lay actors into decision-making arenas, as opposed to a consultation exercise that still excludes lay actors from the inner circles. Overall, it appears that authors who take the perspective of lay actors are more concerned with democracy than efficiency, are more likely to focus on collective rather individual representation, and are more concerned to draw lay actors into a sustained relation with insiders. Those who write from an administrative or managerial perspective are, in contrast, more likely to think of participants as representing their individual opinions and experiences, and to understand participation as a means of gathering data rather than sharing power. Neither group seems to be particularly concerned with the impact of lay participation. The following sections of the chapter address the dynamic relations between the two sides of these fault lines as well as the relation between the questions of objectives, representation, and the relation between insiders and outsiders.
Participation as Democratic Process: What We Have Learned
Lay participation as a democratic process empowering service users has received far more attention in the literature than participation as a means for achieving health system outcomes. Most often, however, it is addressed in normative terms, as hopes or expectations that are rarely tested, and even less often fulfilled (Jewkes and Murcott 1998). Thus, Winkler (1987), on the basis of a description of participation strategies used by a Community Health Council, suggests that through participation, users can introduce items onto the council’s agenda, force changes in the language used when referring to patients, challenge conventional ways of doing things, and channel information to their constituents. However, the empirically based literature casts considerable doubt on the extent to which these good intentions bear fruit (Checkoway 1982a, 1982b; Fitzpatrick and White 1997; Grant 1989; Lipsky and Lounds 1976; Milewa 1997; Milewa et al. 1998; Pickard et al. 1995; Steckler and Herzog, 1979). Indeed, Winkler herself refers to case study evidence of organized professional resistance to user empowerment.
Researchers have accumulated long and varied lists of methods used by administrators, managers, and physicians to foster lay participation (Checkoway et al. 1984; Donovan and Coast 1996), but the difficulty of any of these methods actually to engage lay participants is a major issue. ‘Apathy’ is often cited as the principal obstacle to recruiting and maintaining lay participants (Donovan and Coast 1996; Grant 1989). For example, in experiences reported in the United States (Parkum 1980) and Quebec (Godbout 1981), it was found that citizen participation in either management or planning boards dropped off significantly as the organizations in question became institutionalized. In studies of the Oregon experience, one of the most important efforts to date to mobilize public participation around the highly charged issue of health-care rationing, a wide range of means of engagement were implemented, from town hall meetings to telephone interviews. Yet almost 70 per cent of participants in these community consultations were health-care workers, not lay consumers (Lomas and Veenstra 1995).
Indeed, lay actors do not appear to be interested in playing a sustained, decisive role with respect to most health-care issues, although they are more willing to be consulted. In a Canadian study using deliberative polling, a cross-section of randomly selected lay individuals, interested citizens, elected officials, administrators, and health-care experts were asked to identify which of these groups they deemed most appropriate to make decisions regarding a series of health issues (Abelson et al. 1995). For most areas, elected representatives and public administrators were considered the most appropriate groups to take primary responsibility for decision making, with experts included mainly with respect to management issues. Experts were, nonetheless, deemed to have some role to play in all areas, while the role of interested citizens was considered important only with respect to revenue-raising decisions. Randomly selected citizens were overall the least preferred as decision makers, even by their peers. Because the research methodology sought to ensure that participants made informed choices, the results are not likely to reflect ‘apathy’ on the part of citizens so much as a considered judgement of democratic accountability and administrative competence.
Clearly, drop-outs and poor response to recruitment drives are not always the result of reasoned deliberation on the part of lay actors. In an article analyzing the phenomenon in the context of American Health System Agencies, Marmor and Marone (1980) refer to the effects of ‘unbalanced political markets.’ Groups of actors lodged close to the active center of the health system, who depend on it for their professional status and effectiveness as well as for their livelihood, have important stakes in the outcome of deliberations and decisions. They are therefore highly likely to mobilize and articulate their preferences and ensure that their agendas are met. In contrast, within the lay public, personal health-care interests tend to be highly diffuse, and the personal benefits of participation are far from clear. Unless an individual or group has a particular interest, such as a neighborhood hospital closing or the availability of home care for the elderly, mobilization is far less likely and less intense than it is for those whose working conditions, professional interests, and paychecks depend on health-care decisions. This explains the more important role accorded concerned citizens as opposed to random citizens in the deliberative polling study by Abelson and colleagues.
Furthermore, research on decision-making processes suggests that members of the general public are unlikely to come to committees or councils with strong, pre-established opinions and preferences on the issues (Hibbard et al. 1997). Opinions are rather constituted through the process of participation, and are therefore relatively unstable and easy to influence. Providing training for lay participants, as some administrators do, may make it easier for them to participate more effectively, but is also likely to reinforce insider control over the agenda, the flow of information, the deliberation process, and the legitimacy of various opinions and orientations. For example, while lay members of the boards in Quebec’s CLSCs were highly interested and motivated citizens, the professional staff had far greater stakes in maintaining control over services, and were in a position to ‘handle’ their boards in such a way as to limit their ability to influence the organizations’ activities and overall orientation (Godbout 1981). In this and similar cases, the waning of lay participation can be better attributed to alienation than to apathy.
The existence of concentrated, organized community interests, along with accountability to an outside constituency, emerge in the literature as the most important factors in keeping the process of lay participation alive, even if it provides no guarantee (J. Berry 1981; L. Berry 1988; Bowl 1996; Checkoway et al. 1984; Goold 1996; Grant 1989; Jewkes and Murcott 1998). Insiders, whether professionals or managers, tend to be well-organized in associations of various types which consolidate and sustain their interests or stakes in the health system. Although they rarely participate as official delegates of such associations, they are often taken to represent the perspective of their profession or establishment and, in highly charged situations, can count on the resources of their associations or organizations for support. This type of interested participation on the part of insider groups can be a source of conflict, but such conflicts are typically institutionalized; the positions of the various groups are well known to all, and much of the conflict is resolved backstage.
In contrast, there is a clear reluctance to bring in outsiders representing concentrated, organized, well-articulated interests, and who have access to outside resources to support them (Berry 1988). A study by White et al. (1994) revealed that the possibility of prolonged debates, open conflicts, surprise moves (such as media involvement), and efforts to reset the agenda are seen as a serious threat to decision-making processes, which are geared to achieving consensus, often within a deadline. Thus, many administrators will argue that participation is not about the representation of lay interests, but rather about broadening the forms of expertise and experience that contribute to quality decision making. This suggests that, in the eyes of administrators, lay participation is primarily concerned with efficiency, not democracy.
There is a clear tension between lay participation as a democratic versus an efficiency-enhancing process. Even where there is little danger of disruption and instability, as when participation is solicited through questionnaires, it still represents an administrative burden because of the increased number of people and steps involved and because of participants’ uneven awareness and understanding of issues (Donovan and Coast 1996; Lipsky and Lounds 1976). This is why it is a common strategy for insiders to hand-pick or coopt known lay actors (typically, concerned citizens with some experience in the health field) as opposed to requesting outside groups with particular interests to delegate representatives. However, cooption poses a whole host of thorny problems for lay participation as a democratic process (Grant 1989; Rose 1990; Wistow and Barnes 1993).
For example, in contemporary societies where sensitivity to diversity is increasingly valued, it may be expected or required that participants represent the full sociodemographic diversity of the community (Marmor and Marone 1980). Many social groups, such as the mentally ill or physically disabled, ethnocultural minorities, and the economically disadvantaged, are organized in associations that advocate for their interests. Indeed, some planning boards in the United States, and some Community Health Councils in the United Kingdom, have adopted policies so that a number of lay representatives are delegated by such interest groups and are accountable to them, but this is hardly a universal practice. Most administrators try to avoid the disruptive effect that single-interest participants are seen to have on mixed boards and councils (Bowl 1996; Grant 1989; Rose 1990). Indeed, the tendency in the health field is for administrators to nominate familiar, knowledgeable, cooperative individuals who also happen to have the required cultural, racial, demographic, or socioeconomic characteristics. While it has been demonstrated that such characteristics may indeed be predictors of attitudes and opinions (Verba et al. 1993), the individuals who are likely to become representatives are typically part of an élite that has emerged within the social group in question, with attitudes and interests that may well differ from those of the ordinary lay citizen (Jewkes and Murcott 1998).
Strategic recruitment is one of many methods of maintaining efficiency on mixed boards. Others include controlling the flow of information and the rhythm of meetings, burying participants in documentation, bulldozing a committee’s way through controversial dossiers, or simply multiplying the number of committees that ‘do nothing’ (Aronson 1993; Bowl 1996; Lamoureux 1991). Along these lines, Steckler and Herzog (1979) furnish an amusing but accurate compendium of administrative strategies for keeping lay boards ‘out of your hair and off your back.’ Furthermore, control and efficiency can be maintained by keeping lay actors at a greater distance from core arenas of activity, for example, by reducing participation to the occasional consultation or focus group, or ultimately, by tapping public or local views through remote, one-way, data collection exercises such as surveys or interviews. While surveys are becoming an increasingly popular strategy, they can trivialize the concept of lay participation. For example, patient satisfaction surveys have been criticized for focusing on the ‘hotel’ aspects of patient care such as food and room decoration at the expense of issues that are known to be of greatest concern to service users, such as the dynamics of staff-patient interaction (Fitzpatrick and Hopkins 1993).
Furthermore, serious questions can be raised about the status of survey data for decision making in complex contexts. For example, the aggregation of individuals’ values as expressed in survey results can produce some abstract notion of ‘average’ values which can be interpreted in either an indiscriminate or a strategic fashion, depending on who is doing the interpreting (Donovan and Coast 1996). Lay respondents to surveys have no control over the manner of interpretation, and concerned individuals may hardly recognize their interests or views in the aggregated results. Moreover, the results are typically taken to represent ‘community’ views or needs, without any clear definition of the ‘community’ in question (Jewkes and Murcott 1998). This provides another strong argument in favor of collective representation, where participants are not randomly selected but rather selected or delegated as concerned citizens, representing articulated interests or concerns (Bowl 1996).
In the final analysis, from the perspective of lay participation as a democratic process, the principal issue is that of accountability (Jewkes and Murcott 1998; Marmor and Marone 1980). This involves not only questions of representation, but also mechanisms to ensure that ‘voice’ is translated into action. Through such mechanisms, democratic process and substantive outcomes are linked. Yet a recent British study of lay participation in a mental health forum found that more than 50 per cent of the issues raised by lay participants were ignored, another 30 per cent were either explained away, rejected, or deferred, and less than 20 per cent were positively addressed (Milewa 1997). The lack of any clear commitment on the part of administrators and other authorities to actually use the information provided or perspectives expressed by lay actors in the context of such forums (even where lay comments are positively received) and the absence of transparent mechanisms for translating lay voices into action are seen to seriously weaken the potential effectiveness of such exercises (Aronson 1993; Fitzpatrick 1994; Milewa 1997; Pickard et al. 1995). To the extent that these failures become obvious to lay actors, alienation or so-called apathy prevails.
However, lay actors do have other choices with respect to the manner of their participation. Unless representing the interests of a particular constituency, they may not have a personal interest in contributing to the efficiency of administrative decision making. Indeed, from the perspective of many advocacy groups, drawing lay actors into administrative decision-making arenas too easily neutralizes their potential input, damages their credibility, and creates a dependency where, in order to participate, they must rely on insiders for pertinent information and cues as to the issues (Grant 1989; Jewkes and Murcott 1998). Their perception is that the centripetal forces of administrative participation can ultimately rob them entirely of their own agenda (Lipsky and Lounds 1976). Many such groups prefer to remain firmly at the periphery, where they retain the capacity for independent, oppositional action based on self-defined goals (Rose 1990). Such independent advocacy is the prototype of participatory democracy. Informal networks, with their broad, loose ties, or direct action involving the press are often seen to be more effective paths into core decision-making arenas than controlled contact within formal administrative structures (Berry 1981; White 1993a). In this case, nonparticipation is a function of neither apathy nor alienation, but rather, strategic choice.
The accumulation of case studies suggests that, for autonomous lay groups, participation as a democratic end in itself is firmly tied to participation as a means of influencing decisions or attaining goals, but efficient administration requires the neutralization of specific interests that are more appropriately defended in the political arena than at the administrative center of the health system. There is, therefore, a constant tension between the political and administrative dimensions of participation (Croft and Beresford 1989; Feingold 1969). To counteract the destabilizing effects of potentially conflictual participation, administrators play it safe: they recruit known individuals who have some link to the health system and who are likely to focus on broad, community, or societywide goals rather than particular lay interests, no matter how loose their status as lay representatives. They choose forms of participation that do not involve sustained interaction, such as occasional consultations or surveys, or where sustained interaction is tolerated, it is strictly controlled. In this light, participation as a democratic end in itself is a contradictory process in which insiders encourage lay actors to participate and provide the resources for them to do so, while at the same time working to ensure that lay participants are largely dependent on insiders for both information and cultural cues and remain firmly tied to the administrative agenda.
Impact: What Does Lay Participation Achieve?
Considerably less attention has been paid to the impact of lay participation in the health field, as compared with process. This is partly because of the difficulty of separating out the effects induced by the intervention of lay actors from those that may have occurred without their presence. Yet one of the most prevalent concerns in the literature is the effect of participation on the participants themselves. In a community health tradition, many professionals see the prime function of lay participation as therapeutic: it gives people a sense of dignity and self-respect; it increases their self-esteem; it develops their capacities and skills; it enables them ‘to discover their own real interests’ (Hawker 1989: 289). Professionals may contribute actively to promote these outcomes by offering consciousness raising, training, and other support to lay participants, but on Arnstein’s (1969) ladder of participation, this approach lies at the very bottom rung; the principal outcome served by this ‘feel good’ perspective is the legitimation of the participation process itself. As Bowl points out:
For those driven by the therapeutic imperative, issues of representation, and whether or not service users have access to real decisions, and indeed ensuring that views that do emerge from user involvement are fed into mainstream decision-making, are secondary to [participants’] development of skills and confidence. (Bowl 1996: 173)
One might presume that concern with the impact of lay input would be most common in the area of patient satisfaction and community needs, where it is clear that results fed back into the system could be useful for improving services in ways that would show an increase in user satisfaction. Yet surveys are typically conducted as isolated, one-off studies that cannot test the impact of their results on service delivery or clinical outcomes, nor the impact of such changes or the level of patient satisfaction or well-being (Fitzpatrick 1993). The effectiveness of patient surveys may therefore be assumed to lie in the ‘human relations’ value of the process, with little effective regard for impact.
Interestingly, there have been a greater number of studies concerned with the impact of lay participation on substantive goals more complex than satisfaction or needs, such as regional planning, priority setting and resource distribution. One of the most exhaustive case studies examined over 150 US planning agencies, in which outcome measures were obtained by asking administrators alone to rank the extent to which consumer involvement in regional planning had any of a number of given effects (Checkoway et al. 1984). Most agency officials believed that participation had been instrumental in improving the quality of local health services, increasing their accessibility, increasing the flow of information to and from the agency, and raising public awareness of health issues (Checkoway 1982a). On the other hand, they claimed as well that hospital administrators and physicians were the most influential participants, followed by other health workers, with lay actors the least influential.
Despite the administrative bias of this study, it emerged that the factors having the least impact on the perceived effectiveness of participation were those associated with the size of the agency’s budget, and with administrative efforts to promote participation such as recruitment, publicity, and training strategies. The variables that had the greatest impact on the perceived effectiveness of participation were (a) executive commitment, measured by the number staff dedicated solely to the promotion of lay participation, and (b) community factors, such as a tradition of citizen participation, public awareness, and organized constituencies to which lay participants were accountable (Checkoway et al. 1984). Again, the relation between democratic process, through the representation of lay constituencies, and the effectiveness of participation was clear even to administrators who tended to adopt ‘safe’ participation methods.
From this and other research, we begin to learn that within fairly similar forms of participation, lay input can have more or less of an impact on different sorts of goals, and that this impact is not always in the direction desired or expected by politicians, administrators, professionals, or social scientists. For example, lay participation is sometimes touted as a valuable instrument for challenging traditional professional practices. An evaluation of the impact of lay participation in Quebec’s CLSCs, as well as other studies, showed positive effects on service accessibility and responsiveness to local needs, but no impact at all on professional practices (Godbout 1981). Furthermore, Godbout suggests that assertive lay participation was a factor in blocking political efforts to transform primary health care in the province. There is little evidence anywhere that lay participation of any type, including independent advocacy, is highly effective for mitigating the effect of professional preferences and institutional ambitions on health-care systems.
This raises the delicate question of the types of impacts that are actually expected of lay participation. Is there any reason to believe that decisions effectively influenced by lay actors would differ from those made by insiders themselves? To address this question, several studies have compared lay and expert priority rankings of health services. In one US study (Fowler et al. 1994) there was substantial convergence in two-thirds of ratings, but where differences did occur, they tended to show victim-blaming tendencies amongst lay respondents: the public was less willing than healthcare system insiders to provide treatment for diseases considered to have been brought on by the victims’ own behavior or lifestyle, such as lung cancer in a smoker or drug addiction. A UK study (Bowling et al. 1993) that compared the priority rankings of several groups, including random citizens, community groups, general practitioners, specialists, and others, found that the general public ranked high-tech surgery and intervention for life-threatening conditions higher than did physicians. As Bowling and colleagues conclude, priorities based on lay decisions might very well be contrary to ‘the spirit of equity and equal access according to need’ to which most of our Western health systems aspire. They might also put upward pressure on costs.
This observation takes us back to our original question: Why are governments and other authorities determined to continue investing in lay participation with so little evidence of its impact? If lay participation is costly, if it is not the only option available to lay actors for making their voices heard, if it threatens administrative efficiency, does not appear to be effective but, if made more effective, may destabilize administrative practices, and finally, if effective participation would risk imperiling some of the very objectives that recent policies and reforms throughout the West have been advancing, why do governments and their agencies continue to advocate and support lay participation?
The Transaction Costs of Administrative and Political Action
The fact that lay participation is typically neither very democratic nor very effective, in the ways that have been discussed so far, suggests that we may have been looking in the wrong places to determine its value. Lay participation is not about empowering consumers and communities or about turning them into decision makers, but rather, it is about empowering existing decision-makers. This perspective makes it possible to account for the political and administrative investment in participation.
The Oregon experience in rationing health services illustrates this argument (Coast 1996). In a bid to broaden the availability of public health insurance, the state of Oregon had tried and failed to impose service rationing by fiat. It was decided that a second attempt would have to be more transparent and in line with community values. Towards this end, a wide range of formal and less formal consultation procedures were undertaken to determine the public’s values, including a telephone survey about the value of certain treatments for given symptoms or conditions. The results were fed into cost-benefit calculations that considered medical effectiveness and cost-effectiveness as well as the community assessment of value, according to an explicit formula. Although the Oregon consultation process has been hotly criticized on numerous methodological and ethical grounds (Coast 1996; Hansson 1994; Lomas and Veenstra 1995; Nelson 1994), and although ultimately, the state itself had to back away from some of the implications of its calculations (Blumstein 1997), the exercise has been hailed by insiders as ‘a pioneering attempt…in the context of the state’s particular democratic traditions’ (Golenski and Thompson 1991).
Be that as it may, the Oregon experience did not significantly empower lay actors; physicians and health economists had the greatest influence on prioritizing services, and tightly controlled the nature and use of lay input. Moreover, the outcome of the exercise was treated with all the necessary flexibility when the unanticipated consequences of its rigid application were revealed, thus overriding a certain number of ‘community values’ as well as other criteria originally used to prioritize services. Most authors seem to agree that the principal value of the exercise lay in the public dialogue and debate it engendered. This public dialogue gave the appearance of accountability to a government undertaking a politically delicate task, even if the effective role of the public was far more ambiguous than advertised. Nowadays, public dialogue and debate are not to be underrated, and can ultimately influence political decisions. Indeed, therein lies the value of autonomous forms of lay action such as advocacy. However, in the public debate raised in the context of Oregon’s formal exercise in lay participation, the objectives were predetermined, the initial consultations remained ‘exploratory,’ the final survey was strategically designed, and the outcome was defined by insider interpretations. The process served mainly to gage the public acceptability of certain sorts of rationing decisions, and to ensure that the ultimate decisions taken by the government, its administrators, and experts would be politically unassailable.
These uses of lay participation are not to be regarded cynically. The designers of the Oregon experience, like the designers of Quebec’s CLSCs and other radical exercises in lay participation throughout the West, took significant administrative and political risks. However, it may be mistaken to understand these actions as an investment in democracy and public choice, as advertised. Rather, they may best be seen as the transaction costs of successful public administration. They empower administrators by reducing the uncertainty of public response and cooperation, by increasing administrators’ confidence in the actions they take (Fitzpatrick 1994), and by alleviating authorities of sole responsibility for delicate decisions (Donovan and Coast 1996). Moreover, lay participants have a distinct role to play in comparison with others, such as physicians or staff. Because they can less easily maintain control over their own contribution to decisions, they are useful to administrators either as an ally to counter the interests of more powerful groups, or to control the balance of power between two strong, opposing insider groups (Landsberger 1980; White et al. 1994). In these ways, lay participation also differs significantly from autonomous lay action such as advocacy or participation in social movements in health, which have their own constituencies, agendas, resources, and expertise (Croft and Beresford 1989; Epstein 1995; Popay and Williams 1996; Rogers and Pilgrim 1991; Rose, 1990; Stacey 1994; Williams et al. 1995).
The costs of lay participation in terms of money, time, bureaucratic inefficiency, and political risk thus constitute the transaction costs of setting up and maintaining ‘consumers,’ ‘citizens,’ ‘communities,’ or ‘the public’ as powerful administrative and political resources. However, those costs are variable, as we have seen. They can be contained by limiting lay participation to one-way transactions, as in surveys and other data-gathering exercises, or by controlling it through recruitment and information management techniques. Thus, the Oregon experience was costly to the extent that it mobilized significant financial and human resources, as well as in terms of the risks involved in fostering public debate. The risk factor was controlled, however, for the debate was carefully structured by administrative means. What is important is that this risk was significantly less than that of simply rationing health services for the poor without public consultation, and allowing the public and the press to attack the decision makers freely in the political arena, as had occurred only a few years earlier in Oregon (Coast 1996).
Similarly, when the Quebec government chose to establish the first CLSCs in partnership with grassroots community action groups, and to give them majority status on the boards of directors, it suspected that not doing so might be more costly in political terms than doing so. On the other hand, when the CLSCs proved to be a political minefield rather than a triumph, the Minister of Health himself stepped in and redefined the rules of the game. Thatcher’s introduction of the quasi-market in the British National Health Service was accompanied by strong consumerist language and a renewed call for health-care administrators to pay attention to ‘lay voices.’ Ensuring that lay voices are representative of health-care users or potential users, or that a mechanism is in place to translate voices into action, is less pertinent than ensuring that this valuable category of people (consumers or citizens) can be seen to collaborate in health-care decisions. In less politicized forms of lay participation, such as patient satisfaction surveys, the same logic applies. Eisenberg (1997: 20), for example, argues that the justification for such surveys lies in ‘the relationship between patient satisfaction and such issues as patient adherence to treatment regimens, predisposition toward litigation, and the tendency to disenroll from a health plan.’ For politicians, administrators, managers, and other decision makers, then, lay participation is a valuable strategy for risk management.
Lay participation gains increasing political support with each new wave of health reform. The capacity to claim that reforms either reflect ‘public values’ or, more often, that they empower ‘citizens,’ ‘consumers,’ or ‘communities’ is valuable protection against the higher political costs of resistance and opposition to radical reforms (Rochefort et al. 1998). Without political support, lay participation would likely have remained a dimension of community health practice rather than an administrative mantra. Administrative bodies would rarely find the resources to implement it, and lay actors seeking to influence their health-care environments would have to engage in independent civic action, including advocacy and social movements in health, a challenge far more formidable for the disadvantaged and marginal than for élites and experts (Williams et al. 1995). It is therefore important to avoid the Manichean conclusion that administrative lay participation is manipulative while independent advocacy is empowering. Advocacy or protest groups and social movements can occupy more than one stage at a time (Rose 1990). They can act simultaneously within the system and beside the system, as well as oppose the system, and if lay participation presents the possibility of manipulation, there is also the possibility of resistance. Regardless of the gap between rhetoric and practice, in the absence of formal exercises in lay participation, those without a voice would likely remain unheard.
The rhetoric of democracy and empowerment that has always surrounded lay participation has, according to the research, almost never been translated into effective practices. Those who participate in formal structures and exercises may contribute to the capacity of administrators to make informed decisions that benefit communities, as certain of the rare outcome studies have suggested. It is evident that the extent to which such outcomes are produced depends on the willingness of administrators to develop mechanisms for translating voice into action, and on the level of autonomous organization of lay participants themselves. These are the two principal factors that might empower lay actors. Studies of the practices of administrators in organizing and managing lay participation processes indicate, however, that lay empowerment is simply not on the agenda. To advance their own agenda, lay actors with particular health-care concerns typically have to empower themselves by organizing, advocating, and taking independent media or political action from their position at the periphery of the health-care system. As outsiders, they can confront insiders in oppositional ways that are not possible when they have been joined in an asymmetrical relation of dependency.
That lay participation in health-care decision making is, to a significant extent, less an investment than a transaction cost of administrative legitimacy and risk management is one conclusion we can draw from what is known about its dynamics and outcomes. This hypothesis should not be seen to disqualify lay participation, however, but rather to distinguish its rhetorical from its practical and political value. Lay participation as it is preached and practiced is clearly about administrative and political efficiency, not democracy, consumer empowerment, or community control. It derives its value principally from its role as an administrative strategy. We may finally learn more about its impact than we have so far by focusing future critical research on public administration, and healthcare management and decision making in general, with a view to sorting out the actual and relative roles played by lay participation in its proper context.