Consumer and community voices need to be centrally involved in both discussing and influencing government decision making. As well-meaning as the professions, health services, and government bureaucracies are, they are inevitably driven by their own professional, governmental or commercial paradigms and, in some cases, self-interest.
Yet an effective system should operate primarily for the benefit of the users of the system: health consumers, their families and communities. It is time in 2007 that our health system was not only sustainable, but also a national system, underpinned by nationally agreed (but locally implemented) values and principles. This doesn’t seem so much to ask in a country of only 20 million people.
Why do I and many others say there is a crisis looming?
Firstly, there are obvious strong and potentially unsustainable pressures on – and gaps within – the current system. These have been well canvassed elsewhere, including in Health care reform: a journey of courage  (and in the Centre for Policy Development’s A health policy for Australia: reclaiming universal health care), and on the website of the Australian Health Care Reform Alliance (AHCRA). The problems include an ageing population, increasing use of (often expensive) technologies and consistently higher than inflation cost-rises, a very fragmented primary health care system, dire workforce shortages, and a very complicated public-private mix (have you ever tried to explain our system to anyone overseas and noticed how their eyes bulge?).
However, apart from rare collaboration (e.g. the recent joint action on the mental health system), the various tell-tale signs (even alarm bells in some case such as dental services) do not seem to have galvanised Australian governments into significant united action (For example, there is no committee of senior officials from the various state, territory and federal governments that meets around primary health care – the very core of the health system – despite the sector’s reliance on their various funding streams).
The second indicator is the explicit acknowledgement by so many inside the system that a crisis is looming. In fact AHCRA itself was formed because 46 significant national and state health organisations (representing health professionals, health services and consumers) agreed that the current system was too fragmented and would be unsustainable without some radical action.
There are parallels with the water crisis, where governments have been reluctant to label the accumulating plethora of telltale symptoms as a major national problem, until faced with the bleeding obvious (and now it may be too late to solve it fully). In the health system, we have a similar looming crisis with far-reaching implications, but one similarly immune to short-term simplistic patch-ups. Further, like water, it is a crisis that needs a national solution, not nine different solutions. Kevin Rudd’s recognition that Federal-State duplication is a major issue needing urgent action is encouraging.
It is clearly time for a national health system, not fragmented by myopic funding systems, lacking a shared vision and values. So the Health Issues Centre and AHCRA strongly believe that a meaningful (and we use that term carefully) national dialogue with citizens and consumers is needed to help build the first national vision and framework for health care. This does not necessarily mean that only one government would end up running health care. But it does mean that all governments in Australia would use this vision as the basis of their health planning. No such common goals or principles (in which citizens and consumers have had any say) currently exist.
Why is it time for a citizen and consumer engagement?
We have called the required approach an ‘engagement’ rather than just ‘consultation’ for one main reason. We are seeking deliberative thoughtful conversations with Australians over this critical issue. This may sound like jargon to some, but it implies a stronger involvement than just a search for instant answers. We think this is an important distinction.
The case for such engagement can be made from a few perspectives. The obvious corollary from the case for a national system is that for such a significant policy move, citizens/consumers have a right to influence national frameworks that will shape health care for decades ahead. It is commonly argued that significant citizen and consumer engagement is needed when public policy is at a key turning point. This usually occurs when a society is reassessing its options, setting priorities, or mapping the boundaries of major change. The current debate about the future of health care has now reached this point.
A more basic case is that citizen engagement in policy reform is part of a democratic approach to governance in Australia. This is already happening in a range of sectors at lower levels. Indeed, active involvement by consumers, carers and community members is gradually spreading throughout the health system. Certainly at the health coalface, consumers increasingly want better information and more input into decision making on their own (and their family’s) treatment and ongoing care.
Consumer participation is becoming an accepted part of the modern health care approach, now cemented into hospital and community care accreditation standards,, quality and safety guidelines and some governments’ policies. There are now many hundreds of examples around Australia of consumers’ input and involvement at the service level (e.g. feedback, input into new developments); and at the organisational level (e.g. advisory committees, or consumers on quality committees). Although there is yet relatively little formal evaluation of the impacts of this trend, there is much anecdotal evidence of its value.
So involvement in higher level decisions about the future of the health care system flows naturally from this participative movement, and is increasingly expected by Australians. Such counsel about the bigger questions or about broad directions for change is currently rarely sought, but it could easily be so. As Macfarlane has written: “it is their (citizens’) health and their money”.
Lastly, the other strong case for citizen/consumer involvement at such a crucial point is that change needs to reflect the community’s values. When major reform was being considered in Canada, a country-wide consultation was undertaken. The head of the reform commission, Romanow, noted:
“the values we hold play a central role in defining how we view the critical issues facing the future of health care. They play a central role in deciding which problems should have the highest priority, which options are acceptable, and in shaping the solutions we choose to adopt”.
Citizen and consumer engagement can help to clarify how deeply held values are evolving with changing circumstances, as is happening now in our society and health care system (e.g. rapidly changing technologies, rising community expectations, ageing population).
John Menadue has similarly argued that “unless the Commonwealth and State governments involve the community in setting priorities in health spending, we will not make real progress in systemic reform…. Unless the community is locked in through appropriate structures and processes, health reform will not happen. The public must be connected”.
So what type of national consultation do we need?
The federal and state governments should jointly run a national engagement process with citizens and consumers, aimed at eliciting some consensus on the main values, principles and priorities for the future of the Australian health system. This process would be based on a set of principles, described below, so that it was legitimate and credible, transparent, meaningful, information-rich and deliberative (i.e. seeking thoughtful, not merely instant, responses) for participants.
What would such an exercise produce?
Importantly the results should be the critical set of inputs for the development of a national vision and framework for an ‘Australian Health System’. Either the Council of Australian Governments (COAG) or a newly formed Health Reform Council, reporting to COAG, should oversee this. These results would comprise a set of key principles and values that participants (as citizens and consumers or carers) believe should shape the health system in the future. They might act as a sort of ‘design brief’ or set of criteria against which system change should be judged.
What might such an approach look like?
There are several alternative ways of conducting this engagement exercise, depending on the resources available. We have sketched an ideal approach (and we believe the future of the health system deserves a comprehensive approach) as well as a proposal for a more limited (and less costly) consultation with lower, but still valuable impact.
An ideal approach
Community engagement can be as long as a piece of string, but we are proposing a complementary set of methods to both inform all Australians of the need to consider the future of the system (to alert people to the issues and to stimulate national debate) and seek in parallel specific views from a smaller but reasonably representative sample of citizens/residents. Thus it will involve both broad marketing techniques and targeted consultation.
The first set of methods, aimed at the whole population, might include communication via TV, radio and print media to prompt public thought and debate. Some national, broadly accessible, good quality, easy-to-read information should also be made available (via the web, hard copy, translated versions), with a variety of opportunities for people to offer feedback (eg via workbooks, websites, postcards).
The information provided to stimulate discussion would ideally be agreed by all stakeholders in advance, so it was (relatively) non-political, unbiased and factual. In reality that is a near impossibility, but an accepted level of consensus will need to be reached. Ironically, in an exercise to consult the community, getting the professional and political stakeholders to agree on the base information to distribute may be hardest part of the process (but indicative of what often happens and why consumers must have a say!).
This set of ‘whole of population strategies’ would open up access to all, but the input garnered would need to be interpreted cautiously. The responses received from such an exercise always run the risk of being biased towards the louder, more organised, better resourced or the more ideologically driven. That is why the second part of the exercise has been proposed.
Participants for the latter consultation should be drawn from three main groups:
- citizens selected at random – this would form the bulk of participants – a sample of as little as 1000 people may be statistically sufficient;
- high users of care who depend heavily on an effective system, and who have considerable experience of how the system meets or fails their needs (e.g. those who are chronically ill) – sufficient individual consumers and carers need to be involved that their different views are captured; and
- high needs or traditionally hard to reach population groups, including those with special vulnerabilities (i.e. the homeless, people with disabilities) who have special prevention and care needs that are not necessarily met, or who may under-use the system.
There is a wide range of newer potential engagement methods available. Unlike the more traditional mechanisms (seeking written submissions, consultation/town hall type meetings) these methods provide the opportunity for people to engage in representative, well informed, deliberative processes that lead both to recommendations on specific issues as well as a strong sense of people’s underlying values and principles. That is, participants get good quality information to help them see the bigger picture, and the processes allow time for people to really explore the information and come to conclusions from a broader community perspective, not just their own (This contrasts with normal telephone polling, for example, which provides no extra information and seeks instant opinions, not thoughtful responses.)
A variety of methods should be used, none perfect by themselves, but which in combination should provide a fuller picture with less bias than any individual method. Methods might include citizen’s juries, deliberative councils, websites, televoting, round tables, citizens’ assemblies, and ChoiceWork Dialogue among others.
For example, citizens’ juries (CJs) are one of the more widely practised of the new techniques worldwide and have been used in Australia and extensively overseas. A CJ brings together a group that is representative of the profile of a local community or the population as a whole (ideally chosen at random). Participants are asked to consider an issue of local or national importance, usually involving a matter of policy or planning. Although participants are called ‘jurors,’ they also serve as lawyer and judge during the process. Information is presented in a quasi-courtroom, formal setting, and jurors are asked to reach consensus on the issue as representatives of a collective public voice, and not out of self-interest.
The CJ process is designed to allow decision-makers to hear directly from citizens, to learn about their values, concerns and ideas regarding an issue of public importance. The great advantage of the CJ is that it yields citizen input from a group that is both informed and (relatively) more representative of the public at large than typical methods. Its disadvantage is that decisions can potentially be shaped by the provision of unbalanced information, its presentation, and the general lack of understanding by average citizens of the very sick, chronically ill or highly disadvantaged.
ChoiceWork Dialogues (used by the Romanow Commission in Canada) engage representative groups of ordinary “unorganised” people to tackle a complex problem (what balance of services do we need in this community?) and make value-based choices. Participants are given the opportunity to “work through” conflicting values and difficult choices in order to reach judgments on an important issue. ChoiceWork provides an opportunity for people with differing views to find common ground and move forward together. Again, not only is the decision reached of interest, but so are the values voiced in making such choices.
Televoting is a less participative process and allows citizens to cast ballots on specific issues, but differs from conventional polling in a number of significant ways. Televoting provides a randomly selected, statistically significant sample of respondents with balanced, factual background material on an issue before they are polled. The Televote allows easy access to more detailed information, and time to consider the information and issue/s before making a decision. It is a useful follow-up when more in-depth methods (such as above) have identified some key values or principles and confirmation or prioritisation is needed from a larger group of citizens or consumers.
The involvement of a sample of citizens will give a sense of the views and priorities of ordinary Australians. However, this sample of general citizens may not appreciate the special needs of those forced to use a lot of health services because of their chronic conditions. Similarly, the needs of minorities may not be sufficiently understood by all citizens, especially as experience shows that such groups are often under-represented in mainstream exercises. Specific involvement of these three groups will therefore provide a more balanced set of outcomes.
Numbers consulted do not need to be large if random sampling methods are used and the findings from the various methods are triangulated. However, they do need to be enough to be defendable and legitimate or the exercise may be considered futile.
Internationally such large scale consultations or engagements are not new, and broad community exercises have been undertaken in the UK, Sweden, New Zealand, France and especially Canada, as noted above.
More modest versions
More modest versions of the above could be undertaken. For example, the broader marketing of the consultation to the public could be left out, and the focus could be on the specific consultations. Further, some overlap with other already planned consultations could enable some processes to provide local answers and views, as well as underlying values and principles useful to the national exercise.
However it is undertaken, the community engagement process clearly needs to be seen as legitimate by the community, along with key health interests and politicians. If lacking, it will be perceived as a waste of time. There are several ingredients to legitimacy. The process should:
- be non-partisan
- be transparent, and run by an independent organisation
- be information-rich for participants, that is they receive good quality, readable, full information on which to base their responses
- be deliberative, i.e. people will get the chance to listen, question and discuss before giving their final views
- use a variety of methods (to minimise biases) and triangulating findings
- be well resourced and facilitated
- be non-burdensome and respectful of participants’ contributions .
It should also be meaningful for participants, i.e. the findings should be linked to some genuine policy processes, such as suggested above. This list may seem a tall order, but in our opinion most of it is viable with careful planning.
What is already happening?
AHCRA are planning a very simple consultation this year to pilot some of these approaches and to feed some early community perspectives into the National Health Summit in July 2007. The Alliance will also be talking to private funders to seek funding for some further pilots of the proposed approaches, and approaching governments over time to discuss these proposals.
Benefits of Community Engagement
There would be a broad set of benefits from the practices above:
- giving Australian citizens and consumers a variety of opportunities to become involved, and helping provide a citizens’ vision for health care;
- enabling citizens and consumers to make thoughtful and productive contributions that can act as building blocks to shape the future of public health care;
- increasing public awareness about the difficult choices of health prioritising in a cost-constrained environment;
- tapping the public’s ability to give meaningful information to policy-makers about their important underlying values and principles;
- increasing social cohesion by ensuring that diverse voices are heard;
- increasing understanding among those involved about how deliberations with governments proceed, and of what is or is not possible in a representative democracy; and
- building some consensus and community trust, hence decreasing the fear of change.
Good quality consultation does not, and should not, come cheaply. There is a litany of poorly resourced and implemented consultations in Australia to prove that case. However, the likely costs are still very modest. The smaller scale approach (citizens juries, televoting and smaller scale deliberative councils) might just be able to be run for under $600,000. Adding an Australia-wide communications strategy to stimulate country-wide debate would probably cost several times that amount.
These costs are a drop in the ocean, in the context of making a system sustainable which currently costs over $87 billion per year. They are also minimal in relation to estimated cost savings if a more rational health system, based around citizens’ stated values, could be created. Recent analyses estimate that one to two billion dollars are wasted each year in duplication within the current system, where both State and the Commonwealth run parallel bureaucracies.
Crucially, the findings from a national consultation could move us towards a system that is more closely based on what Australians want and need, not just what the diverse interest groups in health care want. This has been neatly described in the title of the Victorian health participation policy ‘Doing it with us, not for us‘.
The proposals above are ambitious. However, the future of the health system is a crucial issue. The current system has clear gaps (although blind spots to decision makers) and a significant degree of unfairness. We believe that creating a health system based on a national set of values and principles (regardless of who actually runs the services) is a necessary step forward to create a sustainable and sensible system. And of course, citizens and consumers clearly need to play a central part in shaping that move.
 John Dwyer, 2006, ‘Health care reform: a journey of courage’. Accessed at http://cpd.org.au/node/3858
 Centre for Policy Development, 2006, ‘A health policy for Australia: reclaiming universal health care’. Accessed at http://cpd.org.au/paper/health-policy-australia-reclaiming-universal-care
 Australian Council of Healthcare Standards, 2006, ‘The ACHS Evaluation and Quality Improvement Program (EQuIP) 4, Standards’
 Quality Improvement Council, 2004, ‘Health and Community Services Standard – 5th Edition’.
 Victorian Quality Council, accessed at www.health.vic.gov.au/qualitycouncil
 Department of Human Services, 2006, ‘Doing it with us not for us – Participation in your health service system 2006-09: Victorian consumers, carers, and the community working together with their health services and the Department of Human Services’. Melbourne.
 MacFarlane, D. 1996, ‘Citizen participation in the reform of health care policy: A case example’, Healthcare Management Forum, Vol. 9, No. 2, pp. 31-35.
 Menadue J. 2003, ‘Health Reform; Possible Ways Forward’, MJA 179(7) 367-369.
 Health Canada. 2000, ‘Health Canada Toolkit for Public Involvement in Decision-Making’. Health Canada.
 Drummond, M, 2003, Presentation to National Health Summit on Estimates of Savings, August 2003, Canberra.