Community

‘Community’ is a good example of a concept whose particular meaning has been eroded through familiarity and common use. Indeed, it has been suggested that because the term is applied in a wide range of contexts and is used to describe many different and changing situations it has become almost meaningless (Dalton & Dalton 1975). While this may be true, at least in part, it is hardly productive. Stacey (1988) and Massey (1994) provide more useful insights. Both these authors suggest that the term can extend beyond the notion of a common geographic locality to incorporate such issues as shared thoughts, traditions and commitments. They see the emergence of communities as collective identities based on close associations or friendships or founded on commonalities of religion, ethnicity or politics.

Peterson and Lupton (1996, p 163) discuss the use of the term ‘community’ in new public health discourse. They accept that it is ‘generally used [strategically] to designate some supposedly fixed space or place, and more specifically a geopolitical entity defined, or circumscribed, by local government administration’. They perceive this sense of community as being synonymous with the notion of ‘neighbourhood’. However, they baulk at the proposition that the concept necessarily assumes ‘harmony’ of affiliations and homogeneity, arguing instead (p 167) that the ‘local community [can be] … a site for exclusions’. This, and the assertion that communities transcend place (that is, that they may exist without being in the same locality) are important issues to bear in mind given our interest in ‘working partnerships’. As we shall see in relation to community participation in decision-making, the myth of the ‘homogeneous community’ is likely to be severely tested by multiculturalism and other forms of social pluralism (Braye & Preston-Shoot 1995).

Consumer and consumerism

The term ‘consumer’ is used most often to refer to an individual who purchases or uses (or has the potential to use) a good or service, irrespective of whether he or she demonstrates discriminating behaviour in so doing. When that consumer is actively assertive and demanding and is willing and able to shop around for the ‘best deal’, he or she can be described as a ‘consumerist’ (Williamson 1992). The neo-classical economic concept of the market stresses consumer sovereignty and choice, where the customer possesses sufficient information and insight to make informed decisions about the quality and range of goods and services being offered and is in a position to evaluate and select between service options.

It has become fashionable in most countries to apply the label ‘consumer’ or even ‘customer’ to recipients of health care in lieu of the traditional terms of ‘patient’ or, predominantly in the ambulatory context, ‘client’. This shift in designation evokes a distinct alteration in the way in which recipients of care are conceptualised (Lloyd et al 1991, Lupton 1997). The root meaning of the word ‘patient’ is to endure, to bear and to be long-suffering. As Palfrey (2000, p 23) suggests, the ‘very word patient … has clear semantic associations with being passive’. Such passivity, of course, is at odds with the assertive, empowered quality fundamental to consumerist behaviour.

Ultimately, health care consumerism entails a capacity and willingness on the part of individuals (or groups) to exercise choice about which services they will use. Being willing and able to decide to use particular health services requires the following five conditions:

The shift in thinking about the role of patient as consumer persists. Nevertheless, there are several obvious limitations to applying the market economy model within the context of the medical or health care encounter. The list is a lengthy one and includes such issues as asymmetry of information, monopoly of knowledge, a largely non-commercial and one-way relationship of dependency and trust between practitioner and patient, uncertainty and raised anxiety about health status (Hall & Viney 2000, Leavy et al 1989).

In terms of consumerist behaviour a distinction needs to be made between consumerism at the individual and mass levels. Typically consumerism as a movement is centred around politically organised group activity, with the objective of achieving benefits for the consumer at that level.

Community and consumer participation

A comprehensive account of the principles of community participation is to be found in the final background paper of the Australian National Health Strategy (NHS) series — Healthy Participation (Commonwealth Department of Health, Housing and Community Services [DHH&CS] 1993). In this monograph, community participation is presented as the range of activities which, in an ideal world, involve community members, either as individual consumers or as a group, in a sharing of benefits and responsibilities based on joint decision-making and problem-solving. The monograph stresses that the potential for ‘healthy participation’ exists at several levels of the health care system: at the level of the individual consumer/carer, the individual provider, the particular facility or institution, the aggregated network of agencies, and the regulatory and political levels. While these levels are linked, the way in which each level involves people is likely to be different. In relation to the service level various forms of participation exist, some of which are emphasised in the NHS document and include consumer feedback and evaluation, voluntarism, consultation and public discussion, representation, self-help care, advocacy and complaints procedures. Many of these are explored in detail later in this chapter.

The NHS monograph also provides a visual representation of the various forms that participation may take (DHH&CS 1993, p 26). A hierarchy or continuum of types of participation based on the work of Arnstein (1969) in the field of community development in the United States, and that of the United Kingdom Health for All Network (1991), is used and is reproduced here as Figure 5.1.

FIGURE 5.1 Gradient of consumer participation

Source: Adapted from Arnstein S 1969 A ladder of citizen participation in the USA. Journal of American Institute of Planners 57(4):176–82; and United Kingdom Health for All Network 1991 Community participation for health for all. United Kingdom National Health Service, London

In Arnstein’s original framework only the top three forms of participation (what she termed ‘community control’, ‘delegated authority’ and joint or ‘partnership planning’) are considered meaningful in terms of ‘citizen power’. Arnstein saw all other forms of participation as tokenism or non-participation. Whether her delineation is overly rigid will be addressed later. Suffice to say here that there are alternative views to suggest that advice and consultation may be valid forms of participation given certain conditions (Baum 1998).

Also relevant to our interest in consumer participation is Draper’s (1997, p 15) tabulation of the range of ‘consumer voices’ with which hospitals and other health service organisations can interact (via feedback, consultation, advocacy etc). She notes the following sets of consumers:

individuals with experience of service use;

groups of consumers who share common experiences of health care or lack of it;

people who care for individual consumers;

consumer organisations (advocacy groups, research bodies, self-help networks and consumerist organisations);

potential consumers (including those with unmet needs, and particular population sub-groups such as Aborigines and Torres Strait Islander people, people from non-English-speaking backgrounds, people with disabilities); and

members of the wider community.

Community engagement

Consumer and community participation as espoused by health departments usually relates to consumer involvement in decisions about an individual’s own health care needs and to decisions about changes in health service policy and service delivery or the development of health service plans. The days when government bodies whether they be federal, state or local, act without involving members of the community are practically non-existent except in situations that require immediate action, such as a natural disaster or when confidentiality needs to be maintained.

In contrast, community engagement is about a number of government organisations seeking the active participation of individuals, groups, unions, commercial businesses, research bodies and community organisations on an ongoing basis on a range of health, social, cultural and environmental issues rather than limiting the participation to one set of predetermined health directions. This form of community engagement may involve a number of government departments working together to promote a whole of government ‘Community Engagement Framework’, similarly to those operating in Queensland and the Northern Territory.

In small communities, such as those found in the Northern Territory, it makes sense to follow a policy of community engagement rather than each government department doing their own consumer participation activities. It also helps to prevent participation fatigue by consumers.

The Northern Territory Government believes that community engagement:

Fosters better relations and a two-way relationship between Government and Territorians.

Recognises that people have a responsibility with Government for addressing issues in their community.

Brings people together to work towards common goals.

Provides opportunities for Territorians to find out how Government works, and become more informed about issues.

Enables Territorians to have a stronger voice in the Government’s policy decisions and in the delivery of services.

Provides a positive environment that encourages the building of productive relationships and partnerships with business, community, industry and researchers.

Facilitates better coordination and regulation of Government procedures and Government departments’ relations with the general population and stakeholders.

(Northern Territory Government 2004a, p 1)

The Northern Territory Government sees the need to consult on issues:

Where the best results will be achieved when Government departments and the community work together.

Where there is a range of interests and views.

When policy options require tough decisions, trade-offs and compromises.

Where Government wishes to open an informed debate.

Where local issues need local solutions and the community needs to be involved in deliberations from the outset.

(Northern Territory Government 2004b, p 1)

Consultation

Consultation has tended to be one of the more commonly used forms of public participation in the health sector, although it is not always popular with managers and bureaucrats. When performed well, consultation can provide useful information to assist in accurate issues identification and thereby enhance the policy development process. It can also be used to help garner public support for proposed services and can be an efficient way of facilitating program implementation. Decried by Arnstein (1969) as a less than perfect approach to community involvement, in part because it can disadvantage the more vulnerable (‘the voiceless’) within the population, the process of consultation nevertheless provides the public with a role in decision-making in the planning and monitoring of health care and related services.

The federal government defines public consultation as a ‘form of community participation whereby governments and public bodies formally seek out the views and opinions of individuals and community groups on specific issues’ (Commonwealth Department of Human Services & Health 1995). Some states and territories view consultation as ‘a two-way communication process that provides a feedback loop’ (Northern Territory Government 2004a).

There are many consultation techniques (including publications, promotional campaigns, polling and surveys, public inquiries and hearings, and discussion papers) that do not incorporate participatory decision-making objectives but instead focus more narrowly on information giving, information seeking and/or information sharing. Some of these techniques require consumers to be computer literate and expect consumers to be available to give instant responses to issues.

Customer focus

The use of the term ‘customer’ is usually linked to commercial, market-style conditions where an individual or an agency buys, or in some way acquires, goods or services and others seek to profit from the transaction. Although there are difficulties in accommodating competitive market principles in relation to health care, governments in many countries have been eager to introduce market reforms that to differing degrees treat users of health services as customers. One such initiative, premised on the requirement that health facilities ‘organise themselves around the needs of the users of their services’ (Draper 1997, p 6), was the ‘Customer Focus’ strategy introduced by the Government of New South Wales, Australia, in 1993. This initiative was undertaken to defray criticism that the public hospital system in New South Wales had become too organisationally centred, increasingly hierarchical and overly concerned with throughput and process. In this context ‘customer focus’ reflected the extent to which a service meets a need, solves a problem or adds value for the customer (Customer Focus Unit 1993). It is a process centred on the realisation that quality is not only determined by the supplier of services but is perceived also by the recipient of those services. So while customer focus may incorporate elements of continuous quality improvement (CQI) or total quality management (TQM) it is not limited to such formal programs. Operationalising the concept often requires an enhancement and in some cases a refocusing of existing quality improvement programs to clearly identify the cost of poor quality; for example, a negative view of the organisation, employee burn-out or increased absenteeism.

In practical terms a customer-focused health care facility would be anxious to anticipate and provide for patient or client needs. It would actively seek out feedback (both positive and negative) and give prominent attention to patient comments. It would be committed to improvement for all levels of staff with an emphasis on team thinking about how to optimise patient outcomes. It would be prompt in acting on identified patient complaints and would be motivated to develop strategies that might add value for patients.

There are several ways in which hospital and other health care facility staff can enhance customer focus. These include identifying the specific types of customers using the agency; articulating current customer focus activities; listening to customers via complaints, suggestion boxes and focus groups; establishing customer indicators of quality and from these planning the best outcome scenarios; analysing what customers believe the facility does well and what it does not do so well and using this information to consider how organisational performance might be improved.

Interestingly the terms and concepts — TQM and customer focus — were not terms favoured by many Australian clinicians who viewed these terms as too commercial and a passing trend. The clinicians preferred to use the terms ‘patient focused’ or ‘best practice’, terms which they had developed.

Accountability

Accountability is at the heart of both public participation and customer focus. It incorporates two related concepts. First, it entails an explicit or public responsibility to someone or some agency for an action undertaken or supported, or for an omission of an action. Importantly, this responsibility extends to the consequences or outcome of those actions or inactions. Second, accountability requires the necessary authority to initiate or reject the action. In the health care sector, different aspects of accountability are evident. Providers and funders of services have a responsibility for wise decision-making in determining and implementing policy that will optimise goal attainment. For example, at the broadest level, governments and their health bureaucracies may be held accountable for the availability (accessibility) and adequate resourcing of facilities and for regulating standards of services provided.

Measures that governments can take to assist in ensuring accountability include negotiated service agreements, health impact and cost-benefit assessments, and data collection on practice variation and discretionary surgery rates. Health professionals and those who manage them can also be held accountable for the efficiency, timeliness and appropriateness (in other words, the quality) of their practices and procedures. The very nature of professional practice entails a strong desire for self-evaluation and review. What is apparent is that this internal accountability is often more influential than externally imposed regulations and measures. Nevertheless, health care agencies have a responsibility to monitor and report on their core activities. Consumers of health care services also have a responsibility for taking an active role in determining not only what is acceptable but also how quality will be monitored and assessed. The difficulty for laypersons in coming to terms with the complexities and subtleties of health care delivery can be lessened through consumer networks working in tandem with health professional groups and government.

Public participation and consultation in the health domain have proven to be difficult concepts to evaluate in terms of effectiveness. Development of indicators for consumer participation has mainly been limited to patient satisfaction/expectation surveys, accreditation surveys and committee involvement surveys. Many health services have yet to develop monitoring systems for measuring the effectiveness of consumer participation in terms of the number of issues raised by consumers during the consultation and their resolution, the applicability of the issues raised per target populations and whether the consultation activity was related to policy development, service delivery, planning or evaluation.

Consumer rights and responsibilities

In many countries in Asia and the Pacific, the rights of consumers are enshrined in law with various government departments and statutory authorities charged, among other things, with developing and monitoring industry codes of conduct, and enforcing consumer protection legislation. While much of this legislation is relevant to the health sector, the peculiar nature of health care and, in particular, the vulnerability and transience of health care consumers makes it essential that additional processes be established to safeguard the public.

Often health is referred to as a fundamental or essential right. In its absence, people are unable to benefit from other rights of citizenship and cannot enjoy quality of life to the fullest. However, as Lenaghan (1996, p ii) notes, ‘health cannot be an enforceable “right” but health services, as a means of achieving health, and the manner in which they are distributed, may be’. In several countries individual hospitals and regional health authorities have introduced public statements about the significant rights of their patients. In summary the more comprehensive of these statements indicate that there is an expectation that patients will be:

treated with care, consideration and dignity;

made aware of what services are available;

given a clear, concise and understandable explanation of their medical condition, the treatment/s proposed and associated risks entailed, and the existence of alternative modes of care and their likely repercussions;

allowed the opportunity to consent specifically to all diagnostic and invasive procedures, and able to withdraw such consent at any time;

entitled to refuse treatment on the grounds that it is experimental or involves medical or related research;

given the right to a second opinion where this is practicable and to information on any costs that might be incurred from their hospitalisation;

entitled to have the confidentiality of their condition and treatment maintained and to have access to their medical file;

free to leave the health care facility at any time;

entitled to access health care promptly on the basis of need;

able to lodge complaints about aspects of their care and have formal complaints investigated; and

entitled to receive care that is sensitive to religious and cultural beliefs.

The concept of ‘rights implies duties’ is an emerging public health issue with profound implications for current and future generations (Peterson & Lupton 1996). However, at the level of the individual patient, there are relatively simple and specific responsibilities associated with being a recipient of care. Patients should:

remain well informed of their treatment by asking questions of staff and significant others;

know their own and their family’s medical history;

ensure that they understand and adhere to health facility protocols and procedures;

be considerate towards other patients;

be punctual in keeping appointments; and

comply with prescribed treatment or, if they do not intend to do so, advise the health care team accordingly.

Essentially, patient charters are tools for achieving rights (see Box 5.1). Consumer organisations worldwide use eight consumer rights to lobby on behalf of consumers and validate the views of consumers. Box 5.1 shows how the Australian Consumers’ Health Forum has adapted these eight rights to their own areas of interest and outlines the basic needs of health consumers.

Proponents of charters argue that they represent aspirations and expectations, being designed to educate and inform and to assist people in articulating and acting on concerns as well as providing a means of having those concerns dealt with (Commonwealth Department of Health, Housing and Community Services 1993, Consumers’ Health Forum 1990, National Activities on Patients’ Rights and Quality of Health Care Working Party, Consumers’ International, 2001). Charters also provide a consumer focus to standards of service. Those who support them suggest that to be useful, charters must have three characteristics. First, they should be comprehensive in order to fulfil their educative and informative role. Second, they should be expressed in such a way that they are meaningful to courts, tribunals and complaints mechanisms. It is important to note that by themselves charters do not create legal rights but rather are designed to assist in determining whether standards have been adhered to. Third, they should be widely known. Commonly it is the more educated in society who are aware of their rights through access to such information.

The debate on the worth of patient charters continues. Opponents of patient charters argue that they have the potential to raise expectations to unattainable heights and to be largely unenforceable. For example, Lloyd (1993, p 21) maintains that patient charters may:

Consumers are now raising the subject of why there are so many different patient rights and responsibilities charters. Each public health service/program has developed their own patient rights and responsibilities charter. A consumer involved with the care of (1) a child, (2) an adult requiring acute care, (3) an aged relative, (4) a relative requiring mental health care, and (5) an expectant spouse could find themselves exposed to five different patient rights and responsibilities leaflets from one health service.

In Australia, consumers are asking for a core list of rights and responsibilities, which is in place right across the public health system. In some states/territories, consumers have also expressed dissatisfaction with clinicians working in the public health system stating they only follow the rights and responsibilities as espoused by their clinical colleges rather than the organisation that employs them.