You Win Some, You Lose Some: The State of Play in Health Consumer Representation in Australia

• References

An Australian expert on health care once said that the way complaints are handled gives some idea of the status of the consumer.  ¹   Using this yardstick, we have come a very long way since the end of the nineteenth century. Then, patients in Australian hospitals for the treatment of sexually transmitted diseases could be sentenced to solitary confinement or even imprisonment for "showing disrespect" to the matron or doctor, never mind actually complaining!   ²   At the end of this century, national funding for state health care is tied to, among other things, an obligation on states to provide complaints mechanisms about health care services. That complaints are now seen as an essential and valuable part of the health care system is in part a reflection of the success and advances of health consumer advocacy in Australia.  ³  

Consumer representation in health care services, policy, and research is extensive in Australia by international comparison.  ⁴   Indeed, it is difficult to find an example of such a far-reaching health consumer movement anywhere else. There are many cultural and historical reasons why this might be so.  ⁵   Certainly, seeking community input into the development of health services began earlier in Australia than in many other places. The first documented community consultation by government on a health care issue that I have identified occurred in 1944, a long time before such consultation became a phenomenon elsewhere.  ⁶   For all that, though, Australians face much the same set of problems as consumer representatives in many other countries, perhaps just on a greater scale in some ways.

A key factor in the evolution of health consumer advocacy in Australia has been the support of successive national governments for a consumer-initiated body representative of health care consumers, the Consumers’ Health Forum of Australia ("the Forum").  ^{5  ,   7}  This combination of national governments concerned to see an independent stakeholder’s voice for health consumers continue and a consumer movement eager to advance its cause has been vital in extending the reach and influence of consumer representation. While the relationship between national governments and the Forum can be fraught with complications arising from a dependence on government funding, providing a mutually acknowledged bridge between the government and the health consumer movement has been important.

Having a health consumer lobby based in the nation’s capital, regularly communicating with political and bureaucratic arms of government has kept consumers’ concerns and priorities on the agenda. It has provided a clear route for the Forum’s member organisations to participate in government policy and decision-making processes. Meanwhile, the Forum has provided government with a relatively simple conduit to consumer opinion – and a way for government to communicate its views and activities to a wide constituency of community groups and leaders in health.

The Consumers’ Health Forum is a national coalition of consumer and community groups with an interest in health that provides and supports consumer representatives on more than 100 national committees at any time. Soon after its establishment in 1987, the Forum produced guidelines for consumer representatives, now in its fourth edition.  ⁸   The Forum has held training workshops for consumers on a variety of topics: consumer representation, participating in research, developing consumers’ research, writing grant applications and understanding research.

The Forum develops policy and provides consumer perspectives on a broad range of issues. Its achievements include the development of consumer participation in the pharmaceutical evaluation process in Australia and in reforms to general practice. It has developed valuable materials about consumers’ views of quality in general practice and a tool for measuring consumers’ views of quality. The Forum has successfully extended consumers’ rights to be informed in health care and has put informed financial consent onto the agenda in Australia.  ⁷  

The existence of a well-funded health consumer lobby has helped consumer and community groups to take advantage of an increasing interest in consumer participation. Indeed, the growth of the health consumer movement and the growth of government and professional interest in consumer participation have each propelled the other along. Over the years, a number of national government reports have addressed the role of consumers in the health system, culminating in the development of a governmental Consumer Focus Collaboration in 1997.  ⁹   That has resulted in turn in the establishment in 1999 of a National Resource Centre for Consumer Participation in Health. The Centre’s role is to provide support for health care services that wish to engage in consumer feedback or consumer participation. Methods of effectively involving consumers are being reviewed and models are being developed.

Support for the establishment of the Forum was an important "primer" for the development of the health consumer movement in Australia. In a way, the activities of the Consumer Focus Collaboration aim to play the same role for the professional side of the consumer participation equation. Just how successful this will be, though, in a time of budgetary constraints in the health care services remains to be seen. With services and professionals being squeezed from every angle, consumer participation is often "last on, first off". This remains one of the greatest challenges to realising the potential of consumer representation in Australia.

There are many other challenges and barriers as well. There is still not enough training and support for consumer representatives, although it is offered by the Forum and many other consumer groups. Consumer representatives continually express their concern at the difficulties and barriers they face in putting the rhetoric of participation into practice.  ^{8  ,   10}   Those bodies involving consumer representatives, too, complain of difficulties and inadequacies in the system. There is still no clear or effective mechanism for regular monitoring and evaluation of the experience of consumer representation, which has become an urgent priority.

The health consumer movement’s ability to build up the capacity of individuals as representatives is limited by several factors. One is funding, both for training and support, and then for the general activities of the consumer groups "on the ground" from which individuals interested in pursuing this activity emerge. Nor is there adequate funding for the representatives themselves: too often, there is no compensation for the amount of time involved, or even for the necessary expenses (such as telephone use for consultation with other consumers or the nominating consumer organisation). This shortage of funding for consumer and community groups places severe restrictions, in particular, on the reach of consumer and community groups. It becomes hard even for the most socially privileged people to participate effectively, never mind expanding the capacity of less advantaged communities to have a clear and powerful voice.

As support for consumer participation increases, so too do the demands and expectations placed on representatives. When I first started "consumer repping" back in the early 1980s, representatives were basically just trying to legitimate their presence, and even just get themselves taken seriously. Now they can find themselves expected to write sections of reports or pamphlets for consumers, or any other number of tasks. While this is progress, in many ways, it also places new stresses on representatives, and clearly requires an ever-broadening range of skills beyond knowing how consumers feel about their health care. This blend of increasing professionalisation coupled with the expectation of volunteerism is creating great stresses.

Another challenge this stage of development brings is that the "honeymoon" period with consumer groups can pass with quite a thump. The original enthusiasm and rhetoric about community representation can flag in the face of the practical experience. There are critical cultural differences in the way consumer and community groups function in comparison with bureaucracies, professional organisations and industry groups. Some stem solely from the discrepancy in funding and the consequent shortage of paid organisers. Access to technologies, particularly communication technologies, plays an important role here.

Other complications come from the inevitable consequences of any group being built on a volunteer base, where opportunities to meet face-to-face may be rare or intermittent – especially when illness, disability and great distance are involved. Whenever anyone wants to consult consumer groups in a short time frame, it can be guaranteed that the single monthly meeting of many of them will have been just the day before! Obviously, too, there will be a difference in priorities between consumers and others; and greatly contrasting styles of approaching issues and tasks. Meanwhile, every government, professional or industry group can think their issue is the most important one, needing to be dealt with quickly and easily in a "professional" manner.

Professions, governments and bureaucracies then increasingly move to thinking they could organise consumer representation more satisfactorily than those unwieldy community groups. While one of the original rationales for consumer participation was community accountability and a collective voice for community members,  ¹¹   there is a trend now towards individualism. A return, in many ways, to the "eminent lay person" model of the past  ⁴  , which the move towards accountable consumer representation had largely superseded.

This constitutes a critical challenge to the development of consumer participation in health in Australia. It may be that, rather than a direct line of progress in greater community participation, we are seeing something of a pendulum swing. Consumer participation in health is a social movement arising from a variety of heritages, around rights, responsibility, citizenship and accountability.  ⁴   It is has a close and overlapping relationship with moves to community development in health and moves for communities, such as indigenous communities, to exercise greater self-determination and community control in health.

The "lay person" model, by contrast, comes from a different place: from the individualistic, "doing good for others" model that saw community members placed on hospital boards and ethics committees, for example.  ⁴   The individual approach is fairly clear and easy to live with, and even easier to implement. However, it has been pointed out by disability advocates that implementing consumer participation in a non-participatory way is inherently problematic.  ¹²  

The consumer model is a greater challenge for all concerned. Seeking to satisfy expectations of consumer participation by quickly retreating back into just finding "the right individual" is, in many ways, the easy way out, but it is both theoretically problematic and hazardous in practice as well.

While free from the constraints of the fully representational role, the non-aligned and unaccountable individual is also limited in their ability to represent and engage a wider community in the issue under question. Evaluation of experiences in community development in health has shown that broadening involvement is critical, and that limiting participation to key individuals without engaging broader constituencies seriously restricts the potential of community participation and hampers its effectiveness.  ¹³  

The non-aligned individual also faces a greater danger of co-option to the agenda of those who first invited them into the process. There is a world of difference between being accountable to a consumer group and being there on your own responsibility. The only way representatives can really maintain their independence and consumer perspective is by having a balancing influence from consumers "outside". A consumer representative must always care more about how what they do and say would look to their community than what the professionals "inside" think about them. That can be hard to do without a community group to keep you grounded and to whom your allegiance is greater. It can also be hard in the face of the temptations, often, of power, privilege and being made to feel important and "special" that can come with much participation.

Another developmental milestone for consumer representation has been challenging the tokenism and isolation of the solitary consumer representative on a committee. Being the only one, even if you are accountable to a group outside, carries with it some of the same hazards outlined above. It can also be intimidating, leading to the consumer being very quiet – or becoming quite hostile.

The token nature of consumer representation has also been structurally inhibiting: how do consumers "learn" how to be highly skilled representatives when they never get to see a skilled consumer representative in action? Being able to go in with training wheels, and effectively "apprentice" to a more experienced person, should help to shorten the trial-and-error style that is otherwise the only learning option. With so many people left on their own to sink or swim, important opportunities for consumer participation are often lost. (Not to mention important individuals, who sometimes flee from these situations saying "never again!").

While consumers can sometimes now sometimes negotiate more than one position on a committee, the trends in constructing decision-making structures currently operate against increasing the numbers of consumers. There is a tendency now to move to smaller committees, while also acknowledging a broader range of stakeholders (not just consumers), and thus potential participants. Some of these trends are valuable. There is sometimes now a clear understanding that there must be broader opportunities for consumer involvement beyond simple committee decision-making and consultation, and other structures for input are used more often. However, there are also problems when these structures are used to omit consumers entirely from the main game – to leave them marginalised in a totally separate consumer advisory group with no real influence, getting mightily frustrated.

However, the trends towards more sophisticated approaches to decision-making and consultation and a growing concern for finding better ways to do these things will be valuable for consumer representation. Those issues are on the agenda of the new National Resource Centre for Consumer Participation in Health. Assessing the evidence about the effectiveness of consumer participation is also part of the scope of the Cochrane Collaboration’s international Review Group on Consumers and Communication, which is based in Australia and supported by both the Victorian and national governments.

All of this "official" interest in consumer representation, coupled with increased academic interest in the area as well, has the potential to further advance the development of consumer and community participation in health. However, the arrival of so many new players also presents challenges for consumer and community groups. Experiences in the disabilities area suggest that the increasing interest in consumers could simply offer another area of activity for professionals, without changing very much at all.  ¹²   It is also argued that while the ideal would be that the process of participation becomes a collaborative one, there is also the danger that the entry of so many professional players in the arena of consumer participation could be a colonising experience.

Certainly in Australia, we are already seeing some difficulties arising from increasing demands for consumer participation, at a time when funding and support for grass-roots consumer, community and self-help organisations are dwindling across the board. As we move into a new century, it is easy to see that we have come a very long way in the last few decades. Progress in the next century will depend, though, to a very large extent, on just who gets to play the game in the future.

References

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