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Lay Participation in Health Care Decision Making: A Conceptual Framework

Cathy Charles and Suzanne DeMaio McMaster University

Abstract Lay participation in health care decision making has attracted increasing interest in Canada, with numerous provincial government reports advocating this initiative. Interest stems from a number of factors. Among them is a growing recognition that patient preferences ought to be incorporated into decision making that involves individual treatment choices. Another factor is the desire to increase public accountability for decisions on the allocation of health care resources, in order to make providers more accountable to the communities they serve. There is, however, still considerable confusion over what lay participation really means. In addition, little consideration has been given to whether and how lay participation can lead to better decision making and the criteria by which it should be judged. This article presents a framework based on decision-making domains, role perspectives, and levels of participation and is intended as an initial step toward providing greater conceptual clarity regarding the key dimensions and goals of lay participation in health care decision making.

Introduction

In Canada, numerous recent provincial government reports have advo-

We would like to thank Raisa Deber, John Eyles, David Feeny, Jerry Hurley, Jonathan Lomas and the Health Polinomics Research Workshop at McMaster University for helpful comments on earlier drafts of this paper. We are also grateful to James Morone and three anonymous review- ers for insightful suggestions. We take responsibility for any remaining errors or omissions. An earlier version of this paper was presented at the Center for Health Economics and Policy Analy- sis fourth annual health policy conference, “Health Care and the Public: Roles, Expectations and Contributions,” McMaster University, Hamilton, Ontario, 23-24 May 1991.

1. Responsibility for managing health care systems in Canada is largely delegated by con- stitutional authority to the provinces. For an overview of the Canadian health care system, see

Journal @Health Politics, Policy and Law, Vol. 18, No. 4, Winter 1993. Copyright 0 1993 by Duke University.

882 Journal of Health Politics, Policy and Law

cated increased citizen participation in health care (Premier’s Commission on Future Health Care for Albertans 1989; Nova Scotia Royal Commis- sion on Health Care 1989; Ontario Health Review Panel 1987; Ontario Ministry of Health 1989; Premier’s Council on Health Strategy 1991; Sas- katchewan Commission on Directions in Health Care 1990; Saskatche- wan Health 1992; Government of Quebec 1988, 1990). This parallels an earlier movement in the United States during the 1970s when lay participation was mandated by law on health systems agency (HSA) governing boards (Checkoway 1981a).2

The U.S. experience suggests that lack of clear expectations and roles for lay participants as well as the failure to structure explicit methods of representation and accountability all inhibited meaningful reforms in this area (Checkoway 1981b; Morone and Marmor 1981). Similarly, in Canada, with the exception of Quebec, there has been more talk about lay participation in health care decision making than there has been actual change. Overall, it seems that recommendations from Canadian commission reports, in particular, and from the literature on this topic, more generally, derive from somewhat simplistic assumptions about the inherent merits of a cherished but poorly articulated notion of lay participation. There is little consensus about what the term actually means and no common framework for describing its key dimensions in different health care decision-making contexts.

To help clarify conceptual thinking in this area, we present in this article an analytic framework for describing different dimensions of lay participation in health care decision making. The framework can be used to specify more precisely what is meant by lay participation, using a common language. It facilitates greater understanding of both the content and merits of specific recommendations in this area, provides guidance in de- signing appropriate implementation strategies, and assists in identifying and anticipating potential problems in achieving stated goals.

Evans 1984; Vayda and Deber 1984; Iglehart 1986; Naylor 1986; Lomas et a]. 1989b; Rachlis and Kushner 1989; Lomas 1991a.

2. In the early 1970s, the U.S. experienced elements of a “consumer movement” in health care. This was reflected generally as part of a larger tide of consumer consciousness exemplified by Ralph Nader’s call for “buyer’s rights,” and more specifically in health care by an increasing challenge to the principle of “physician authority.” In addition, emphasis was placed on the need for participatory democracy in health care planning. The passage of the National Health Plan- ning and Resources Development Act in 1974 created a network of health planning agencies and required a consumer majority on each local community planning (health system agency) board (Checkoway 1981a, 1981b).

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Defining Lay Participation

The concept of “lay,” “public ,” or “community” participation in health care decision making, while seemingly straightforward, is, in fact, elu- sive. Attempts to define these terms have taken a number of forms. Checkoway, for example, has suggested that individuals without some kind of financial vested interest in health care decision-making outcomes could properly be labelled lay (Checkoway 1981a: 119). Alternatively, lay individuals are sometimes defined as those without professional expertise in an abstract body of knowledge that can be applied in the health care field (Freidson 1970a, 1970b). However, lay individuals may acquire specialized knowledge as part of their involvement in decision-making structures and/or bring to the process different types of knowledge, which can be regarded as equal even if different (Begin 1991). Another common way of differentiating lay from nonlay individuals in the health care system is to distinguish between providers and nonproviders . This distinction, too, has limitations. Health care managers and government administrators are not providers, but they are part of many health care decision- making structures. Differentiating those individuals and groups who are producers (both direct and indirect) of health care from those who are not may provide a more comprehensive way of making the above distinction. While none of these definitions is precise, they have a common theme: lay individuals are somehow distinguishable from traditional health care decision makers, whether providers, government officials, or managers at the service delivery level.

Rather than dwell on the limitations of any one definition of lay participation, however, it is, perhaps, more useful to seek a conceptual understanding of the social and political trends of which the growing focus on public participation in health care decision making is a part. In this context, lay participation can be seen as both a reflection of and a response to (1) a loss of faith in the legitimacy and superiority of professional knowledge as the key determinant of health care decision making; (2) a redefinition of the appropriate role for provincial governments in local health care resource allocation decision making; and (3) the desire to hold health care providers more accountable to the communities that they serve.

The call for greater lay participation suggests first, and perhaps fore- most, a shift in political philosophy about who has the right to make what health care decisions in whose interests. The shift is toward a more democratic and participatory process of decision making and away from pro-


fessional (particularly medical) dominance. At a policy level, it reflects a view that providers’ technical expertise does not give them any infor- mational advantage when it comes to the numerous value considerations central to today’s health care resource allocation decisions. At a treatment level, it reflects a growing recognition that patients’ values, preferences, and lifestyles ought to be incorporated into the decision-making process when assessing the merits of various treatment alternatives for specific health problems. The approach recognizes that even though there is a strong technical component to decision making regarding the selection of treatment alternatives, in the final analysis, the patient is in the best position to place a value on the benefits and costs of living with the potential consequences of various treatments. The importance of the patient’s perspective is seen in a growing number of research projects in both Canada and the United States that seek to develop algorithms, decision rules, and interactive videos to clarify and explain treatment choices and their anticipated health outcomes to patients. The aim is to provide patients with technical information enabling them to make treatment decisions that reflect their preferences and needs (Wennberg 1990; Baumann and Deber 1989; Deber 1991; Levine and Gafni 1992.) Such information aids also have the potential to break down the traditional knowledge asymmetry between physicians and patients and to enhance the autonomy of patients in the treatment decision-making process.

Second, the call for greater lay participation in health care decision making also results, in part, from a shift in perceptions of the appropriate role and responsibilities for provincial governments (and their large bureaucracies) in health care. The shift is away from a dominant and direct decision-making role and toward a less intrusive partnership and facilitative role with local communities. As Boudreau (1991) notes in relation to the Quebec government’s evolving mental health policy, this role redefinition has the effect of transforming the arena for resolving many contentious health care issues (such as service priorities and cost control) from the provincial to the regional level. In a fiscal environment where the federal government continues to curtail its financial contributions to the provinces for cost-shared health insurance programs (Canadian Coun- cil on Social Development 1990; Rachlis and Kushner 1992) the provinces, in turn, are responding by moving to decentralize difficult resource allocation decisions to the local level, while concentrating their energies on formulating global system objectives and management principles and facilitating and mobilizing local planning and management initiatives.

The third factor is that a major impetus for increasing community in-

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volvement in health care decision making in Canada is the desire to make providers more accountable to the communities that they serve by pro- moting an enhanced role for local communities in health care resource allocation decisions. In Alford’s terms (1975), community individuals and groups represent “repressed structural interests .” Government political support for these groups is intended to enhance their role in relation to more dominant structural interests in health care decision making.

To date, with the exception of Quebec, there have been few mechanisms for involving citizens in the public policy decision-making process, other than “voting with their feet,” and health care policy has been made by provincial health ministries, their bureaucracies, and various stake- holder provider groups, largely out of the public eye. In addition, in a publicly financed system such as Canada’s, health care costs have not been perceived as being the responsibility of the individual, and many fiscal levers to make providers more accountable to consumers do not apply. In this context, lay participation can be seen partially as an insti- tutional arrangement to introduce more accountability, that is, to hold the health care system and providers to a form of market discipline, in a situa- tion where many of the normal mechanisms for making producers more responsive to consumers have been attenuated.

The specific mechanism currently advocated for increasing public accountability by many provincial governments is to decentralize decision making to local boards, with enhanced community representation in order to better reflect local preferences. This strategy incorporates two assumptions, (1) that priorities determined centrally by the provincial government cannot adequately reflect local community preferences and (2) that decentralizing resource allocation decisions to be resolved within the context of regional funding envelopes, as suggested by several provinces, will facilitate cost control and buffer provincial governments from lengthy and potentially acrimonious budget negotiations with individual stakeholders. However, many key issues remain unresolved. For example, what kinds of tasks should lay individuals participate in, how should they be represented, and to whom should they be accountable? The Saskatche- wan government has begun to tackle these issues by appointing interim health district boards, which are being asked to recommend permanent structures and board selection methods for their district (Saskatchewan Health 1992).

The call for greater public accountability should also be seen against the backdrop of an increasingly critical appraisal of many current health care interventions, and widespread concern over rising health care costs.


Evidence of significant small area variations in medical practice patterns in Canada and elsewhere (Chassin et al. 1986; Chassin et al. 1987; Roos et al. 1988; Anderson and Mooney 1990; Wennberg et al. 1987), the failure of many clinical policies to change physician behavior (Lomas et al. 1989a; Lomas 1991b; Sicotte et al. 1991), the lack of proven effectiveness of a significant proportion of health care activity (Evans and Stoddart 1990), and recognition (at least among health policymakers, although less prevalent among the public) of the importance of non-health-care-related determinants of health (McKeown 1976; Evans and Stoddart 1990; h e - mier’s Council on Health Strategy 1991) have all promoted a more ques- tioning attitude of the role of physicians in particular and the health care system more generally. Correspondingly, at a societal level, the women’s health movement, the consumer and self-help movements, and an increasingly educated and informed populace have all heightened awareness of consumer rights and the desire for greater public accountability in health care decision making.

Hi sto r i cal Context

The call for lay participation in health care decision making is not new in Canada or the United States. Many of the provincially commissioned reports of the early 1970s, and even earlier, touched on this theme. The report of the Community Health Centre Project to the Conference of Deputy Ministers, for example, recommended in 1972 the development of district health services administration boards “with representatives from citizen organizations, voluntary agencies, municipalities, and the province” (Community Health Centre Project 1972: 42). Interestingly, in terms of our framework, members were to regard themselves as “area-wide representatives and not only as representatives of a particular interest group” (community Health Centre Project 1972: 42).

The 1973 Foulkes report on Health Security for British Columbians also recommended developing a regionalized structure of health services delivery in which “the public must feel that it is able to participate in the deter- mination of specific components” (Foulkes 1973, vol. 2: (6) 9-1). Foulkes bluntly reported to the New Democratic government in British Colum- bia that “in the existing ‘non-system’, the consumer has been ignored, while the vested interests of the medical profession, the institutions, and the centralized bureaucracy, have been emphasized” (vol. 1 : (3) 3- 1). He recommended that this position be reversed, that services be provided in accordance with local needs, and that community representatives be


elected to newly created community human resource and health centers (vol. 1:(3) 5-2). A regional approach to health planning was also recommended by the Health Planning Task Force (1974) in Ontario, although no mention was made in the recommendations of public participation,

These reports, and others from the 1970s, emphasized as their primary concern the fragmented, uncoordinated, and piecemeal development of health care services within Canadian provinces. The suggested solution was to rationalize the system through various bureaucratic structures (such as community health centers and district health councils) in order to create an integrated system where, some claimed, no system existed before. It was, in Alford’s terms (1979, the corporate rationalizer’s approach to restructuring health care delivery. In these reports, public participation in health care decision making was a secondary and more minor issue, a fallout from the dominant organizational reforms. In most provinces, however, these suggested reforms were controversial, opposed by vested interests, and to the extent that they were implemented, evolved slowly, and on a much more limited basis than envisioned.

Quebec was the exception to this pattern. As Renaud notes (1987: 596), the recommendations of the Commission of Enquiry on Health and Social Welfare (1967-1971) were much more “progressive” and wide-ranging than those of other provinces; greater public participation in health care facilities played a central role in the report’s recommendations, and the emphasis placed on sociodemocratic ideas and goals was unparalleled in scope in Canada. One by-product of extensive government-legislated public participation on a variety of Quebec health care boards has been the extensive empirical and analytic examination of this experience by a variety of scholars (O’Neill 1992). The results suggest that community participation and community empowerment were “two different things indeed” (O’Neill 1992: 297), and that consumer control often ended up consolidating the power of professionals and bureaucrats rather than empowering citizens (Godbout 1981, 1989; Eakin 1984a, 1984b; Renaud 1987; White and Mercier 1991; O’Neill 1992).

Some of the failures of public participation have also been documented in the U.S. literature. Much of this focuses on describing barriers to meaningful lay participation deriving from experiences with government- mandated public participation in HSAs during the 1970s. A predominant barrier is professional dominance in health care which contributes to, and is characterized by, a knowledge imbalance between providers and lay individuals (Krause 1977; Freidson 1970a, 1970b; Starr 1982). Providers have technical expertise not usually shared by their patients, which legiti-


mizes their decision-making authority in the treatment encounter. In a health policy context, there is also an imbalance in the information of lay and professional groups. Resource imbalances are important as well. As Morone and Marmor (1981) have noted, members of the public as citizens have less of the access to staff and other resources that translates into political power and decision-making authority. Status differences between providers and the public reinforce these imbalances, because lay individuals are frequently intimidated by professional authority figures and defer to their opinions. Finally, citizens tend to have diffuse rather than concentrated interests in health care policy, and, consequently, may not press for an active decision-making role (Morone and Marmor 1981 ; Checkoway 198 1 b) . Providers, on the other hand, tend to be well organized and have a large stake in the outcomes of health care policy debates.

To focus only on what has not been accomplished, however, may be, as Morone (1990) suggests, missing the point. Although many of the early lay participation experiments have not resulted in a full transfer of power to the public, there is no question that there is an increasing legitimacy to the demand for increased lay participation in health care decision making. As noted earlier, almost all recent provincial commission reports as well as other health care reviews in Canada (e.g., Steering Committee, Pub- lic Hospitals Act Review 1992) have focused on the need for increased public participation, and this has been a major focus of recommended reforms. Clearly, there is a desire for a more participatory and democratic health care decision-making process in which the medical profession and other dominant interests would no longer play so predominant a role. As Morone points out (1990: 253), “The call for lay participation [has not only been one of] empowering an oppressed group but subordinating a dominant one .”

Current Context

Thus far, we have noted the emphasis being placed on public participation in health care decision making in recent Canadian government reports and have tried to place the issue of lay participation in a broader political, social, and historical context. It is important to conclude this introduction, however, by noting considerable variation and imprecision in the terms used to describe lay participation in these reports. First, although all reports advocate greater public participation, this can mean very different things, ranging from developing a regional health care system in order to empower local people (Saskatchewan Commission on Directions

Charles and DeMaio m Lay Participation 889

in Health Care 1990: 33) and strengthening the role of the individual in health and health care (Ontario Health Review Panel 1987: 40) to en- couraging appropriate use of health services by members of the public (Ontario Ministry of Health 1989: 9).

The language used to describe recommendations relating to lay or public participation is also somewhat ambiguous. Several reports, for example, recommend an enhanced or empowered role for the public or increased opportunities for participation and control without further defining what these terms really mean (Ontario Ministry of Health 1989; Ontario Health Review Panel 1987; Premier’s Commission on Future Health Care for Albertans 1989; Nova Scotia Royal Commission on Health Care 1989). Insofar as these terms are not defined, recommendations incorporating these concepts remain open to multiple interpretations of the precise level and type of lay involvement envisioned. Similarly, expectations for lay individuals’ behavior in different health care decision-making contexts are rarely discussed. Hence, expectations and assumptions that individuals bring to their decision-making roles may be quite variable (and possibly conflicting).

Second, it is not always clear from these provincial reports what the goals of lay participation are or should be. For example, is lay participation to be seen as an end in itself, as a means to other policy goals, or both? Nova Scotia’s Royal Commission report stresses the need for greater citizen empowerment in health issues in order to foster more appropriate use of the health care system (Nova Scotia Royal Commission on Health 1989:3), while Alberta’s Rainbow Report sees lay participation as an end in itself (“we felt that a sense of control is in itself healthy”) as well as a means to make the health care system more responsive to Alber- tans (Premier’s Commission on Future Health Care for Albertans 1989, vol. 1: 18,27).

Third, most reports calling for increased lay participation assume that it is a good thing and will lead to better decision making (without explicitly defining what this might mean). In fact, however, there is little research evidence on whether increased lay participation leads to “better” decisions, or even how this might be defined.

In the remainder of this paper we argue, first, that greater conceptual clarity is required in order to describe more precisely the various possible and empirical types and levels of lay participation in different health care decision-making contexts. A framework for conceptualizing dimensions of lay participation is presented in the next section. Second, greater consideration of goals is required by those who advocate this form


of participatory decision-making both to enhance conceptual clarity and because the implications of viewing lay participation as an end in itself versus a means to other policy goals can be quite different (Charles and DeMaio 1991). Finally, we argue that the anticipated merits of lay participation should be evaluated rather than simply assumed. Lay participation may turn out to be an appropriate model of decision making for achieving certain goals under certain conditions, but not so in others. This is an empirical question, which can and should be researched more thoroughly.

A Framework for Lay Participation

A framework for conceptualizing lay participation in health care decision making is presented in Figure I. The figure graphically illustrates that lay participation is not a homogeneous concept. Rather, it encompasses a number of different types and gradations of participation. The framework provides a systematic way of classifying these, using a common language and key analytic variables.

The first framework variable refers to types of health care decision- making contexts or domains. The second variable defines two alternative role perspectives that individuals can adopt in health care decision making. The third framework variable distinguishes the level of participation in health care decision making, or the extent to which individuals have control over the decision-making process.

Decision-making Domains

Three subdomains are important to distinguish: treatment, service delivery, and broad macro- or system-level decision-making contexts. The first relates to decision making regarding treatments or services to be provided to patients, that is, interventions designed to produce health in individuals. The second subdomain relates to resource allocation decisions, (e. g . , what services are delivered, how, where, and by whom) for a defined service region, such as a region associated with a district health council, or a particular health care facility. The third subdomain relates to broad macro-level health care allocation and policy decisions taken for a broader jurisdiction, such as a nation, state, or province. Macro-level policies, at least in Canada, are often, but not always, public policies made by provincial governments and may relate to both allocation decisions between health and other jurisdictions as well as allocation and other policies within the health care jurisdiction. These three subdomains


DECISION MAKING DOMAIN

ROLE

LEVEL OF PARTICIPATION

Dominant

LEVEL OF PARTICIPATION

Dominant

Pattnenhlp

ConruHaHon I 1 ConruHaHon

Figure 1 Dimensions of Lay Participation in Health Care Decision Making

are not entirely discrete. Particular treatment decisions, for example, are often made within the context of the available service delivery structures. Likewise, decisions in the service delivery domain must be taken within a broader provincial and/or national health policy context. Nevertheless, the distinction between the three subdomains helps to clarify different health care decision-making domains within which lay individuals can participate.

Role Perspectives

Lay individuals can become involved in health care decision making in different ways by adopting a status or role as patients, advocates, tax payers, fund raisers, volunteers, or policymakers, to name just a few. It is less often recognized, however, that individuals can bring different role perspectives or orientations to health care decision-making contexts .3 Two fundamentally different role perspectives can be distinguished: (1) that of a user of health services and (2) a public policy perspective.

While these perspectives are not easy to define, the user perspective reflects a concern with the potential impact of any decision on the indi-

3. Indeed, this is true of many, if not all health care decision makers. Eisenberg (1986: 29- 85), for example, notes the multifaceted nature of physician clinical decision making which can be influenced by the particular role perspective which physicians adopt, for example, self- interest, patient agent, or guarantor of social good.


vidual’s “concentrated” or narrowly defined interests, such as the health and well-being of oneself, family, friends, or a specific constituency or interest group with which the individual feels a particular affinity. A public policy perspective, on the other hand, reflects a concern with some notion of a broader public or community good rather than particularistic goals tied to specific interests. The distinction is important because each role perspective incorporates different attitudinal assumptions and expectations, which individuals then bring to a particular decision-making context.

It is possible to bring elements of both perspectives to health care decision making. For example, lay individuals clearly have a user perspective; that is, they are motivated by a concern with their own health, when making choices as to when and how to access health services and treatments. A number of the recent government-commissioned reports, however, encourage individuals also to adopt a broader public policy perspective by considering what constitutes an appropriate use of health care resources when accessing health care. The suggestion that patients receive information about the costs of their health services (as in the Alberta Ruin- bow report) is intended to have a similar effect by reminding individuals that their personal decisions to access health care have public policy implications in terms of government health care spending (Premier’s Com- mission on Future Health Care for Albertans 1989: 32).4

Sometimes lay individuals may not be advised, or are not clear themselves, on which perspective to adopt in any given health care decision- making context. The result can be mismatched expectations, conflict over roles, and failure to achieve goals, however defined. In a macro and service delivery decision-making context, lay individuals appointed or elected to health care decision-making boards because they represent and are accountable to a particular constituency or interest group will tend to participate from a role perspective based on concentrated interests. Yet one could argue that a public policy perspective will become increasingly more appropriate as the paradigm underlying health-related decision making in Canada shifts away from a focus on the contribution that various parts of the health care system make to health and more toward enhancing population and community health status ,5 whether through health

4. Of course, two of the problems with this approach are that it makes no allowance for the fact that many visits are generated by the physician rather than the patient or that we are not actually able to calculate the real cost of the care delivered to many patients.

5 . It is interesting in this regard to note that the Ontario Ministry of Health has undergone a reorganization, with one of its four reformed divisions designated as the Population Health and Community Services System Group (Ontario Ministry of Health 1992).


care or through policy reforms in other areas (e.g., education, social, or environmental policy). The Nova Scotia Royal Commission report ( 1989: 45) appears implicitly to recognize this issue, when it recommends that members of the proposed Provincial Health Council not serve as representatives of specific organizations or interest groups.

Level of Participation

The level of participation in health care decision making is the extent to which individuals have control over the decision-making process. There is a significant difference between listening to the views of lay individuals on the one hand and shifting full decision-making authority and responsibility to lay individuals on the other. The level of decision-making involvement is key to defining what is meant by participation and the processes established to structure it.

A range of levels of lay participation is theoretically possible, and these have been well documented in the literature. Feingold ( 1977), modify- ing the work of Arnstein (1969), has suggested a ladder of increasing citizen participation to describe different levels of citizen participation in programs mandated by the U.S. government. Feingold’s ladder con- sists of five rungs: informing, consultation, partnership, delegated power, and citizen control. For our purposes, in order to keep our framework manageable while at the same time capturing important distinctions in decision-making control, we collapse this ladder into three categories: consultation, partnership, and lay control. These categories, as a ladder of participation, illustrate that there are significant gradations of citizen participation in health care decision making, and that the higher the rungs of the ladder, the greater the redistribution of decision-making control to the public.

Feingold’s first level of participation, informing, we combine with consultation. Informing, strictly speaking, is not really part of decision making: the individual is simply the recipient of a one-way flow of information, with no channel provided for feedback and no power for negotiation (Feingold 1977: 157). Within our framework, consultation represents the lowest form of actual lay participation in decision making. Consul- tation provides an opportunity for individuals to express their views, but offers no guarantee that individual views will be taken into account (Fein- gold 1977: 158).

Partnership represents a higher rung of the ladder. Power is redistrib- uted through negotiation between lay individuals and current decision


makers. They agree to share planning and decision-making responsibilities. This can be accomplished in the service delivery and macro decision- making domains through such structures as joint policy boards and planning committees (Feingold 1977: 158).

Feingold’s two highest categories are delegated power and citizen control. Individuals in the first category have dominant decision-making authority and can ensure accountability of decisions to them. Citizen control occurs when participants are in full charge of decision making. Although both Feingold and Arnstein have distinguished these as separate categories, we collapse them into one, dominant lay control. For our purposes, what is important is that both of these categories represent a form of high-level autonomous decision-making authority by lay participants and a transfer of power from traditional decision makers (e.g., providers, government bureaucrats, and administrators, depending on the decision- making context) to lay individuals.

The Utility of the Framework

The above three domains, when combined, create a three-dimensional framework or matrix. First, three possible decision-making domains are defined. Second, the framework identifies the two generic health care decision-making role perspectives that lay individuals can adopt-a concern with concentrated interests or alternatively, with broader public or community interests. Combining these two variables yields six possible decision-making cells (A-F in Figure I). Within each cell, the level of participation can theoretically range from the lowest (consultation) to the highest (dominant or full control).

To illustrate, using the first two dimensions, role perspectives and decision-making contexts, an example of lay participation in cell A would be some level of patient involvement in decisions about her/his own care, whereas cell B could be represented by a provincial ombudsman or review committee charged with monitoring standards of patient care in particular types of health care facilities (e.g., nursing homes, hospitals) and representing the overall public interest. Lay individuals involved in health care decision making on regional or district planning bodies could fall into cell C or D depending on whether they were asked to bring a user or broader community perspective to decision making. Cells C and E include individuals or groups with special or concentrated interests, who lobby to influence resource allocation decisions on the basis of these interests in the macro or service delivery domains. As previous research has shown,


the preferences and priorities for treatments and health status outcomes identified by individuals with concentrated interests (e.g., with a particular disease) can be quite different from those expressed by members of the general public (Sackett and Torrance 1978). This reinforces the notion that a particularistic perspective based on concentrated interests and a more universalistic perspective based on achieving broader community health goals may be at odds with each other. Cell F includes, for example, lay individuals represented on provincial or national commissions con- cerned with broad macro-level health and health care policy and allocation decisions, who bring a public policy perspective to decision making.

The predominant types of decision makers that lay individuals will interact with (and potentially take power from) will vary, depending on the specific decision-making domain. At the treatment level, interaction is focused on the patient and health care provider(s). At the service delivery level, managers and providers are likely to be the current key influentials, while in the macro policy domain it is more likely to be government bureaucrats , politicians, or representatives of national health care and health professional organizations.

The framework is an analytic tool for conceptualizing key dimensions of lay involvement in health care decision making. It provides a systematic structure for classifying a range of options available for lay participation and graphically highlights that this is a differentiated concept with multiple meanings.

The framework also highlights the potential for conflicting perceptions about lay involvement. Different groups in society may advocate increased lay participation but hold entirely different views about what this actually means and, even, the extent to which meaningful participation has taken place. Some provincial governments, for example , have begun to encourage public involvement in health policy making, but typically this has occurred at a low level of participation (e.g., consultation), and near the end of the policy development process (e.g., determining de- tails of implementation, rather than formulating initial broad policy directions). For both provider and public stakeholders, however, meaningful participation often means earlier input and at higher levels of participation. The outcome may be dissatisfaction on all sides resulting from very different expectations about what lay participation does and should mean.

The framework also helps to illustrate that many current Canadian examples of lay participation are restricted to a low level of participation-the consultation level only. It is difficult to think of many examples of lay participation at the higher levels. In the service delivery and


macro decision-making contexts, this would require open, participatory decision-making structures. Even in the U. S. (Oregon) priority-setting ex- periment in resource allocation, which incorporated several opportunities for lay involvement, the level of participation appeared to be limited to consultation. Preferences and values elicited from the public through a variety of methods were evaluated along with other types of information (e.g., the costs and effectiveness of various treatments), but ultimately, as reported by Grannenmann (1991), it was the Health Services Commis- sion members who weighed the evidence and decided on the final priority ranking for Medicaid spending.

Finally, the framework depicts the potential for a wide variety of decision-making opportunities. These could involve lay participants in a full spectrum of health issues and decision-making levels.

The framework as an analytic tool has certain limitations. First, it provides a static picture of dimensions of lay participation in health care decision making, while actual decision making in any of the three decision- making domains is a dynamic process encompassing a number of different phases. These range from the initial identification of issues, to the development, evaluation, and selection of various options, through to the implementation of a specific strategy and the evaluation, and often modi- fication, of initial decisions. In terms of our framework, certain role perspectives and levels of participation may be more appropriate for some of these decision-making phases than for others.

Second, the three framework variables are not the only important analytic variables for describing dimensions of lay participation. Within each level of participation, for example, different methods or techniques to ob- tain lay input into the decision-making process can be described. In the macro and service delivery domains, consultation methods tend to include ways of eliciting, and possibly aggregating, individual preferences for services, treatments, or health outcomes. Focus groups, needs assess- ments, public hearings, attitude surveys, public forums, and meetings are some of the more common methods used. At higher levels of participation, the focus is more on defining joint decision-making processes and structures that include lay individuals as more equal partners and involve a transfer to them of decision-making control. Defining an appropriate level of lay participation is a prior step to selecting concrete methods/ techniques for involving lay individuals, since some methods are more amenable to achieving specific levels of participation than are others.


Motivations for Citizen Participation: Means versus Ends

As already noted, there is some confusion about whether lay participation should be seen as a means to other goals or as an end in itself. If lay participation is valued as an end in itself, this suggests that action to increase lay participation in any of our framework’s cells would be regarded as positive. More would be better and the framework provides a kind of blueprint for evaluating how completely this goal is realized in a variety of decision-making domains. It also follows that decisions made by lay individuals through this participatory process would be regarded as legitimate, because such decisions emanate from a participatory process which is valued in and of itself, regardless of the particular policy outcome. Finally, the issue of representation would be crucial. Because the opportunity to participate in decision making is highly valued, the extent to which the views of all affected persons or groups are represented in the assessment and selection of alternative options will be of key importance.

But lay participation in health care decision making can also be seen, not solely as an end in itself, but alternatively, or in addition, as a means to achieving other policy goals. In this case, lay participation should be evaluated according to whether it helps achieve these goals, and the framework’s utility is more as a heuristic tool to help select the appropriate role perspective and level of participation for maximizing goal at- tainment. This suggests that the merits of lay participation in health care decision-making structures should not simply be assumed; rather, the extent to which stated goals are achieved is an empirical question requiring further research.

More specifically, at a time when it is recognized that greater amounts of health care do not necessarily lead to greater health (Lalonde 1974; Evans and Stoddart 1990), it is increasingly argued that health care structures and interventions ought to be evaluated within the context of their overall contribution to improving health status. In that case, lay participation in health care decision making should be evaluated, at least in part, on the basis of how well this participatory process of decision making leads to decisions that improve health status. To date, as noted above, little empirical information exists on this issue. But it is conceivable that lay participation in and of itself may not move us further toward this end (Metsch and Veney 1976; Hadorn 1991). For example, in the domains of macro and service delivery decision making, if lay participants on decision-making boards lobby for services such as more hospitals with-


out regard to their demonstrated impact on community health status or a consideration of more cost-effective alternatives, these lobbying strategies may result in an expansion of health care but do little to improve community health status.

If the goal of improved health status is to be paramount, some might argue that the specialized and often technical expertise of professionals must dominate in all health care decision-making domains and that lay individuals, lacking such knowledge, should be restricted to the lower levels of participation (e.g., consultation). We would argue, however, that this does not necessarily follow. Providing lay individuals with expert knowledge can enable them to overcome information deficits and move to a higher level of decision-making control.

To elaborate, Baumann and Deber (1989) make an important distinction when they identify two theoretically distinct dimensions of patient decision making about treatment alternatives. The first, “problem solving ,” involves identifying-preferably from research data as well as diag- nostic evidence-information on treatment options, possible outcomes, and the probability of each. This technical information regarding possible diagnoses, treatment options, and the potential implications of different treatment choices is one necessary component to the treatment decision-making process and can be compiled for patients by providers. But Baumann and Deber also argue that patients are in the best position to make the final choice about treatment alternatives because these decisions involve placing a value on particular outcomes and weighing treatment alternatives and trade-offs based on individual needs and preferences. Hence, patient preferences are a second necessary component to the treatment decision-making process.

Baumann and Deber’s distinction has two significant implications. First, it allows patients to adopt decision-making responsibility for their treatment without requiring them to be “experts.” Second, it places an obligation on health care providers to ensure that patients are given the information they need to make the most effective decisions possible within the context of their own preferences. In the context of our framework, providing patients with technical information about treatment options and outcomes gives them increased autonomy to make decisions in keeping with their values and preferences and minimizes the (negative) effects of insufficient knowledge on their control of decision making.

This line of reasoning can also be extended to the domains of service delivery and macro health care decision making. That is, if improving health status on a community or broader regional basis is an explicit policy


goal, then specialized knowledge or information on such issues as the key determinants of health, treatment effectiveness, and costs may enhance lay decision making on the most effective and efficient means to achieve this end (Charles and DeMaio 1991). Such information would allow the trade-offs inherent in different choices to be made explicit. The Barer and Stoddart report, Toward Integrated Medical Resource Policies for Canada: Background Document (1991: 1-12), is one of the first Canadian reports to recommend explicitly that the public be provided with more information on the above issues.

Providing lay individuals with information on treatment effectiveness, however, raises some interesting issues. For example, how would lay individuals interpret research findings and evaluate the strengths and limitations of various research designs? What value would they place on this type of information in comparison with other information, such as ac- cessibility of services, when determining resource allocation priorities? Finally, would the definitions of effectiveness favored by lay individuals differ from those of other players in the health care system (Conrad 1991)?

Conclusion

Lay participation in health care decision making, while by no means a new concept in Canadian health policy, has gained increasing and broader interest in Canada in recent years, as evidenced by the numerous provincial government reports advocating this measure. Interest, as we have shown, stems primarily from the recognition that patients’ preferences ought to be incorporated into decisions about their treatment and the desire to increase public accountability for decisions on resource allo- cations in health care. Nonetheless, there is still considerable confusion over the dimensions and goals of lay participation in different contexts of health care decision making, and barriers to lay participation persist.

We have argued in this paper that greater conceptual clarity is needed in defining goals and dimensions of lay participation. Our framework, based on the three factors of decision-making domains or contexts, role perspectives, and levels of participation, is intended as a beginning step in this direction. In order to reduce the potential for ambiguity in both advocating and interpreting recommendations, individuals and groups recommend- ing greater lay participation could use this framework to specify explicitly where they view their recommendations falling in each of our dimensions.

We have also argued that more attention should be paid to specifying the goals of lay participation and to evaluating the results. We suggest that


if lay participation in health care decision making is to be oriented toward enhancing community health status, then providing the public with the technical information to facilitate decision making in line with these goals will become increasingly important, and a key policy challenge will be to identify the specific types of information that will enhance decision making.

History teaches us that lay participation in health care decision making does not guarantee community empowerment (O’Neill 1992). For this to occur, fundamental shifts in power relations must also take place. Cana- dian sociologists have recently argued that the dominance of the medical profession over health and health care is declining in Canada (Coburn 1988, 1992; Wahn 1987). The extent to which the public will come to play a more influential role in different health and health care decision-making contexts in Canada and the impact of this greater involvement remain key areas for future empirical research.

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