Editorial

Participation: if we want to make progress, we must speak clearly

Participation is now recognized to be an important issue in many aspects of health care. However, if we want to further our understanding and improve the ways we support patient, consumer, user, lay, or public participation in health care, we need to be clear what we mean by participation and whose participation in what type(s) of activities we are interested in and why. Progress is hampered both by uncritical adoption of the politically correct position that more participation, whatever that is conceived to be, is always a good thing and by debates that are more heated than informed. I suspect that many disputes are born of a lack of clarity: disputants often fail to recognize that they hold different understandings, definitions and images of participation.

Disagreements about the merits or otherwise of promoting participation in health care may result from:

• different philosophical or ideological stances (leading, for example, to different rationales for thinking participation is a good thing);

• the use of similar words to mean different things (for example, people define `consumers', “participation” and `partnerships' in a variety of ways. See Viewpoint article by Herxheimer & Goodare on pp.␣3–6 of this issue);

• reference to diverse mental images when discussing a particular concept (for example, people talking about shared decision making may be imagining patients with differing abilities and preferences in a variety of clinical settings contributing in varying ways to decisions of differing complexity and import);

• diverse experiences of participation and varying understandings or beliefs about the effects of interventions to promote participation; and

• incompatible valuations of the processes and effects of participation.

Why participation?

Diverse societal developments and trends in thinking have pushed patient autonomy, consumer rights, community empowerment, active citizenship, and other terms and concepts associated with participation, high up health care policy agendas. These all relate, in some way, to patterns of influence and power, but they have different aims and emphases. Distinctions between different purposes and forms of participation are sometimes confused.

Two basic types of argument have been used to promote participation. In the first, participation (or a particular form of it) is viewed as a good thing in its own right. People who adopt this type of argument will probably be keen to promote participation straight away. In the second type of argument, participation (or a particular form of it) is seen as a means to desirable ends such as individually appropriate health care, services responsive to users' needs, or research that addresses questions of importance to patients. People who argue that participation is a good thing if it leads to beneficial ends will be more inclined to both evaluate interventions to promote participation and wait until there is sufficient evidence to suggest that it causes more benefit than harm before they advocate its widespread introduction.

Participation by whom, in what?

A wide range of people might appropriately be encouraged to participate in diverse activities related to health care. However, different issues emerge when we consider the involvement of individual patients in decisions about their health care, service users' (or potential service users') influence over service developments, consumer advocates' input into research agendas or the contribution of members of the public to priority setting. The appropriateness and impact of different forms of participatory engagement vary across participant groups and tasks.

Recognizing participation

Activities to promote participation are usually underpinned by more assumptions than research evidence. In the context of a drive to rigorously assess the effects of health care interventions, activities intended to promote participation should be evaluated, even if the form of participation envisaged is believed to be a good thing in its own right. It cannot be assumed that activities to promote participation will actually result in the participation as envisaged, or that participation will lead to overwhelmingly beneficial effects.

In order to assess whether interventions intended to promote participation actually do so, and to investigate what the effects of participation are, we must be able to recognize participation when we see it. We need valid, reliable measures of participation, or at the very least clearly operationalized ways of describing it. Whether considered generically or in a specific form, participation is a complex concept. Measures or descriptors may need to accommodate several dimensions such as who participates (and in relation to whom), the processes by which they are engaged in participation, and the kinds of influence that they have on decisions, practices or policies.

Important steps towards description and measurement have been taken in some areas. For example, some of the components of a shared decision making process between a patient and the health professional(s) involved in his or her care have been elucidated, ¹ and a framework has been offered to help clarify the dimensions of lay involvement in research. ² Other forms of participation are, as yet, only vaguely described. More work is required, for example, to help us understand what constitutes a `partnership' between a formal health authority and a consumer organization, or to assess the extent to which a local community has been involved in decisions about the configuration of its hospital services.

Questions arise about the relative merits of measures of general and specific forms of participation, and about the possibility of distinguishing, in a meaningful way, between different `levels' of participation within and across specific forms. Early consensus and establishment of a standard measure or measures would be useful for comparisons across studies and would facilitate meaningful combining of results. However, it is also important that measures are valid, reliable, feasible and sensitive. Since this is a relatively young area in research terms, a fairly lengthy period of testing, debating and revising of measures may be needed.

Value judgements

Even given a standard measure and clear evidence from rigorous research about the effects of particular forms of participation, a range of valuations may be placed upon participatory processes and outcomes. People are, therefore, likely to disagree about the adequacy of certain forms of participation and about the balance of benefits, harms and costs of attempts to promote participation.

Value judgements will probably be influenced by the context and the problem or task in which participation is considered – so it is important that these are specified. The situation and views of those who seek to participate or whose participation is being sought are also important. For example, it may be appropriate to use different approaches to involve people who do and who do not use particular services in attempts to make those services more attractive, acceptable and accessible.

Moving forward

A widespread consensus about the best ways to measure, evaluate and promote participation in health care seems quite a long way off. Meanwhile if we are committed to improving understanding and practice, we should be as clear as we can in our discussions and arguments. We need to specify the contexts, participants, tasks and forms of engagement that we refer to, and to be open about our values, assumptions and reasoning.

There are certainly many challenges ahead. I hope that Health Expectations will be a forum in which understanding and debate about all forms of participation in health care can progress.