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What do Australian Health Care Consumers Want from their Health Care System? Fiona Tito Wheatland The 2003 National Health Summit was an important landmark in health care reform in Australia. Not only did the leaders of the medical and nursing professions march up to Parliament House, but they walked side by side with consumers, health care managers and community sector activists. The nature of the Summit was epitomised by the organisers’ invitation to a health care consumer to be an equal participant in the opening session. At that time I was the Principal Health Care Advisor for the Australian Council of Social Services (ACOSS), and very actively involved as a health care consumer representative and advocate through many other organisations. At my Summit presentation, I sought to give voice to the concerns and dreams of users of health care services about what we want our health care system to be like. I set out a consumer-centred framework of eight principles to guide the direction of reforms. Those who use the Australian health care system are often deeply affected by its shortcomings. This gives them a valuable and unique viewpoint — one that is different from those who work in the section or who govern it. Though consumers are not a uniform bunch by any means, there is some consensus about what they want from the health care system. This can be summed up in eight principles. Principle 1: Consumers want access to health care to be universal and dependent only on clinical need, not capacity to pay. Most Australians are still strong believers in the concept of “a fair go” and there is nowhere this comes out more strongly than in the area of health care. People do not want a system where the basic right to health care depends upon capacity to pay. They want a system that delivers appropriate, good quality service when it is needed — regardless of which level of government is funding it. Polls conducted by Newspoll, AC Neilsen and UMR Research all show the public is prepared to fund a better health system by paying higher taxes or an increased Medicare levy, and people give health a high priority. When people were asked in the UMR Research poll whether they would prefer the federal government to provide a significant personal income tax cut or to spend money on better hospitals, almost 80% chose spending on better hospitals. This was not just a self-selecting bunch of soft-hearted Labor, Green or Democrat voters — 77% of coalition voters also preferred support for hospitals (UMR Research 2003). Principle 2: Consumers want all people living in the Australian community to be able to be as well as they can be — regardless of race, age, disability, gender, size, geographical location and any other aspect of the diversity that is our nation. There is mounting evidence that broader social and economic policies impact heavily on health for better or for worse. Perhaps the mostly widely acknowledged example of this is in the health status of Indigenous Australians, where the life expectancy for males is only 56 years–20 years less than that of the rest of the Australian population (Australian Bureau of Statistics 2003). However, it is also true for the non-Indigenous population. At the broadest level, this is reflected in what is called the socio-economic determinants of health and the health-income gradient. For example, increasing income differentials between the upper and lower quintiles of the Australian population have been reflected in a growing health gap between rich and poor Australians over the past 15 years (National Centre for Social and Economic Modelling 2000 & 2000a).

1 Health Issues, 2005, Number 82, pp. 14-18.

More recent research at the National Centre for Social and Economic Modelling (NATSEM) has shown that implementing policies which reduce this inequality (so that poor people’s health was as good as that enjoyed by the top wealth quintile of our population) would have a significant effect. It would mean one million fewer Australians would be disabled, over 180,000 life years would be saved, health care costs would be $3 billion lower, and the government could save $1 billion on disability support pension payments (Walker 2003). Solutions then for the best health outcomes for all Australians involve a broad understanding of what provides the right social and economic context in which our wellbeing can be maximised — a health and wellbeing focus on general economic and social policies, as well as good health policies and practices. Many marginalised groups in our society face stigma in accessing health care, and other services and activities that can enhance their wellbeing. For example, in a recent Western Australian report, people with mental illness were shown to have an overall mortality rate that is two and a half times that of the general population of Western Australia (Lawrence et al. 2001). Whether you are an Indigenous person or a person with a mental illness, someone with a disability or someone who is fat, someone who is old and frail or from a different cultural background, or someone who has a low level of literacy, the stigma and the poverty which you can also experience often results in poor access to the health system and can even affect the quality of care you receive. People living outside metropolitan areas also have a lower life expectancy. While the health differentials are not as great as some other disadvantaged groups, there are still measurable differences in both mortality and morbidity (Strong et al. 1998). We need to remember that Australia is a big country and that all Australians should have access to appropriate health care, wherever they live. Options could involve bringing them to services or bringing the services to them or using technology to overcome the distances. Principle 3: Consumers want health care to be as safe as possible and based upon best available evidence so it delivers the best health outcomes possible for them. Consumers also want health services to be safe and to have quality of patient care at their core. The Quality in Australian Health Care Study, released in 1995 as part of the work of the Professional Indemnity Review, showed the incidence of adverse events in health care occurred in (or resulted in) about 16.6% of admissions (Wilson et al. 1995). Both local and overseas research has supported the findings of this research, indicating that about 10% of admissions resulted in readily preventable harm to a patient (Runciman & Moller 2001, p. xi) Using current Australian admission data (Australian Institute of Health & Welfare 2003) this would mean about 640,000 patients in 2001–02 were harmed by preventable adverse events (Australian Institute of Health & Welfare 2003a). About 20% of these people will have suffered a permanent disability and about 1% will have died. Estimates by the Australian Patient Safety Foundation looking at the comparative risk of death per hours of exposure to an activity said that: “…simply being an inpatient in an Australian acute-care hospital is 40 times more dangerous than being in traffic and only 10 times safer than leaping out of an aircraft equipped with a parachute” (Runciman & Moller 2001, pp. 10-11). There are of course arguably bigger off-setting benefits to receiving health care compared to parachuting, but these figures do not include harm which occurs in community health services, in general practice or in community-based mental health services. It seems likely that if these figures were included the risk exposure of consumers of health care would be even higher.


While much work is proceeding on improving the safety and quality of health care in Australia and overseas, it is clear that we still have a long way to go. Health care is a complex human system, in which human and system errors are ubiquitous. We have only recently started to look at patient safety issues in a systematic way, and to change the culture and practice of health care, where it is inimical to patient safety and sometimes even to its own evidence base. Consumer involvement in addressing these issues is fundamental if public trust in the safety and quality of health care is to be built and maintained. Transparency and openness is really the only basis, at both the individual patient and the broader community level. Principle 4: Consumers want to be informed about our care choices (including the impact of no treatment), and for our decisions to be honoured. This openness includes an acknowledgement that many of the treatments offered by health care are not yet based on high quality evidence, and that consumers have a right to know the quality of evidence supporting a proposed course of treatment, as well as the costs, the side effects, and risks. This information needs to be based upon the best available scientific information, not the promotional material of the companies with an interest in selling the treatment. Doctors need to disclose if they have any commercial interest in the action proposed. It seems to me, where treatments are unproved, they should be subject to the information requirements of an experimental procedure, and providers recommending the treatment should evaluate its efficacy and any problems to build up the evidence base. While the legal system is much criticised in this area, because of medical negligence litigation, the courts have also strongly enunciated the rights of consumers to selfdetermination in health care. From obligations to disclose risk in Rogers v Whitaker (see box) through a range of later judgements, Australian courts have reinforced the position that we have the right to decide what will happen to our bodies. The role of health care is to ensure that patients are informed about their options and the likely consequences (including a refusal of care). Given the known and variable risks associated with hospital admission and various procedures, consumers need better information upon which to make informed choices (including appropriately casemixadjusted performance, and outcome data by hospital and individual health care provider). I sometimes joke that doctors are happy to give patients sufficient information about their options for the patient to agree with their decision. This is not a respectful or satisfactory approach — consumers’ own decisions will include a range of nonmedical concerns and priorities, which they may or may not be able to discuss with the clinician concerned. Patient choices need to be well-informed and honoured by the care team. Rogers v Whitaker (1992) 109 ALR 625 Mrs Whitaker had one blind eye which was operated on mainly for cosmetic purposes. She became blind, when her good eye was affected by a condition called “sympathetic opthalmia”. It was agreed that the surgery had not been carried out negligently and that the chances of the condition occurring was about 1 in 14,000. Mrs Whitaker said that if she been told there was any chance her good eye would have been affected, she would not have had the surgery. The High Court held that Dr Rogers had been negligent in failing to warn Mrs Whitaker about the possibility of sympathetic opthalmia and that there was sufficient evidence that Mrs Whitaker was so concerned about the possibility of going blind that, if she had been told, she would not have had the surgery. The court said that a doctor has a duty of care to warn a patient of a material risk inherent in the proposed treatment and:


“a risk is material if, in the circumstances of the particular case, a reasonable person in the patient’s position, if warned of the risk, would be likely to attach significance to it, or if the medical practitioner is or should reasonably be aware that the particular patient, if warned of the risk, would be likely to attach significance to it.” The High Court also confirmed that the decision about whether the duty to inform had been breached was a matter for the court to decide and was not dependent upon the practices of Dr Rogers peers. Principle 5: Consumers want a health system which supports consumers' own efforts to maximise their wellbeing and which values the choices and priorities of consumers in achieving this. Along with the importance of choice of treatment, consumers can have an active role in their health care. Consumers undertake and can help design useful preventive health-enhancing activities. Examples include: the work of Living Large, a group of large women working together to get and remain physically active; and the AIDS action groups, which have been very active in promoting appropriate prevention strategies against the spread of HIV. Such partnerships are really the only way to ensure the public health message is reaching the right groups with the right messages. Consumers with chronic illnesses are also frequently able to become active selfmanagers in their care. Chronic illness is expected to be the major growth area of health as our population ages, since chronic conditions are more often associated with getting older. If consumers are engaged with their own health care in a very active manner, this is likely to reduce the so-called “health burden” associated with an ageing population and improve the health situation of consumers. There is evergrowing evidence that programs, which teach consumers the skills of selfmanagement, improve both the health status of the consumers concerned and reduce their use of health care services. In painful conditions such as arthritis and back pain, there have been significant reductions in pain, and in most programs there have been reductions in disability, fatigue and worry about their condition (Lorig & Halsted 2000). In Australia, efforts have tended to concentrate on the general practitioner/consumer partnership component — a shared care model. Australian doctors are sometimes heard saying things like “I am self-managing X” — not quite what most consumers have in mind! The United Kingdom National Health Service has gone down a more consumer-centred path, with their Expert Patient Initiative. This uses consumers as expert trainers of other consumers (more like a well-trained self help arrangement, where a doctor is only called on when needed). Such models can better “spread” out the way health care is provided, with doctors and other health professionals fulfilling a consultative role. This approach is likely to reduce unnecessary medicalisation of the management of some conditions, and lead to greater consumer empowerment. Principle 6: Consumers want the health care delivery system to be integrated, not divided by jurisdictional fights about "who pays?" and pitted with many holes where no level of government takes financial responsibility. It probably sound like a truism to say that consumers experience wellness and illness in a holistic manner — it affects their bodies, their minds, their families, their capacity to work or attend school, their social life. If they are living in vulnerable circumstances, it may affect their housing, or their condition may make it difficult to access their own housing or to look after their own needs in the short or longer term. In addressing their situation, consumers want all these things to be considered, and yet the funding silos of government and the gaps in the basic health care system can often leave consumers “between the cracks” and hurting unnecessarily. It can also


leave consumers out of pocket, as different parts of the system attempt to move costs into other areas. Consumers feel the impact of the financial and management silos most at the transition points in health care — moving into and out of hospital, entering or leaving community services, and moving between different specialised services. It continues to puzzle me that these issues remain significant problems for consumers and ones that are not effectively tackled in many facilities. Most of the issues are highly predictable — and consumers experience their failures again and again. Then there are areas where services are not currently available as part of the Medicare safety net; a major issue is access to dental services, but there are also problems about access to allied health services which can assist with rehabilitation and recovery. Different levels of government argue abut who pays, and in the end, consumers do not get the services. The impact of these failures is felt in our ongoing health and our capacity to participate in the community. Principle 7: Consumers want health care to be the most appropriate for maximising their wellbeing, rather than structured inappropriately around turf disputes between professional groups or by the financial interests of powerful lobby groups. Turf battles in relation to maternity services and mental health/counselling are two examples of this issue. Restructuring of the health system around the consumer’s needs and preferences faces almost as many fights in this arena as it does between different funding sources and governments. The best use of nurses, particularly nurse practitioners, is still limited at a time when nurses are trained for greater autonomy, and doctors are claiming to be overstressed and unable to cope with the demand for their services. One of the strongest complaints by doctors, and often communities, is that doctors are overstretched. Given this, why then do they try to monopolise so many areas of business where their special skills are only one of the relevant skills that could be used? What if everyone worked together and got the least-cost, best option sorted out with a consumer, without the barriers of professional jealousies getting in the way? What if the consideration of the best drug for a patient did not come from the leaflet left by a recent drug company rep’s visit? Principle 8: Consumers want to be involved in all levels and locations of the development, planning and implementation of health care. After all - it is our health and wellbeing that is the health care system's "reason to be". In my role as a consumer advocate and as a consumer representative working on various local committees, I bring a different and valuable perspective. I can help find solutions, and ask the necessary difficult questions. I help to keep the system honest, and I report back to the consumer group from which I am nominated so that the processes become more transparent. I work with other consumer groups who are trying to have their voices heard in health services, where health professionals assume that they have nothing to learn from the consumers of their services. How wrong they are! Sometimes for a clinician what I call “the occasion of enlightenment” comes when they — or a loved one — becomes a patient and they are treated “just like any other patient”. This was the experience of Dr Don Berwick, who is a physician and a leading light in the quality movement in the USA. After talking of the kindness of the care received he goes on to say: “The people work well, by and large, but the system often does not. Every hour of our care reminded me, and alerted Ann, about the enormous, costly, and painful gaps between what we got in our days of need, and what we needed. The experience


did not actually surprise me, but it did shock me. Put in other terms, as a friend of mine said: ‘Before this, I was concerned; now, I am radicalised’. If what happened to Ann could happen in our best institutions, I wonder more than ever before what the average must be like” (Berwick 1999, pp. 22-23). He goes on to say that only by abandoning many of the traditional tools of health care delivery, only by opening up the system to the patients it serves and instituting a standard of excellence, will the health care system be transformed (Berwick 1999, intro.). To do this, consumers must have adequate resources — either through meeting their costs of participation as volunteers or, where appropriate, providing a sitting fee, as occurs with other participants on many committees, such as general practitioners. Unlike many people who work in the health system, the commitment by consumers of extensive time to these activities is at the expense of earning a living or carrying out other activities like caring. Consumers will often do this for a short or even a long time, but in the end, it places an unfair burden upon them. I am unsure how many times I have been the only person around a table who is not being paid and who has read my meeting papers! Conclusion Consumers generally want what the health system says it wants as well — health care delivered at the best quality and the best price, where and when people need it, so that our health and wellness is as good as it can be. We must not let the anchors of the old ways of doing business drag down our new ship as it floats outwards. Its framework is strong, and hopefully, the actions which complete its structure will keep it steaming ahead. Principles to Underpin Reform of the Health System Health care reform must be based around the principle of “Nothing about us, without us”. Any changes must: 1.

put the patient in a position of real power in health care and at the centre of any health care decision-making;

2.

Ensure all people are given equitable access to healthcare and other assistance to enhance their well-being, according to their need, not their capacity to pay; and

3.

recognise that wise health care choices for individual consumers and the health care system relies on good readily available information.

Changes Possible Within the Current Health System Structure 1.

Ensuring health care that is provided is appropriate, of a high quality and based on best evidence.

2.

Significantly reducing serious preventable patient harm and deaths from health care.

3.

Improving communication within and across health care, so that consumers and doctors are making decisions with full information.

Fiona Tito Wheatland is a health consumer advocate and academic, undertaking her PhD at the ANU Research School of Social Studies into Patient safety in health care.


References Australian Bureau of Statistics 2003, Australian Social Trends 2003, Health – Mortality and Morbidity: Mortality of Aboriginal and Torres Strait Islander Peoples, Australian Government, Canberra. Australian Institute of Health & Welfare (AIHW) 2003, Australian Hospital Statistics 2001–02, AIHW Cat. No. HSE 25, AIHW, Canberra. Australian Institute of Health & Welfare (AIHW) 2003a, Hospital Activity Rises, Both Public and Private, Media Release 27 June, AIHW, Canberra. Berwick, D. 1999, Escape Fire: Lessons for the Future of Health Care, paper from the 11th Annual National Forum on Quality Improvement in Health Care, New York, pp. 22-23. Runciman, W. B. & Moller, J. 2001, Iatrogenic Injury in Australia, Australian Patient Safety Foundation (APSF), p. xi. Lawrence, D., D’Arcy, H. & Jablensky, A. 2001, Duty to Care: Preventable Physical Illness in People with Mental Illness, University of Western Australia, Perth, p. xi. Lorig, K. & Halsted, H. 2000, Self-management Education: Context, Definition and Outcomes and Mechanisms, paper from the 1st Chronic Disease Self-Management Conference, Sydney, Australia. Downloaded from www.chronicdisease.health.gov.au/conference.htm National Centre for Social and Economic Modelling (NATSEM) 2000, ‘The health gap between rich and poor’, NATSEM News, Issues 15. National Centre for Social and Economic Modelling (NATSEM) 2000a, ‘Income inequality’, NATSEM News, Issues 15. Strong, K., Trickett, P., Titulaer, I. & Bhatia, K. 1998, Health in Rural and Remote Australia, AIHW Cat. No. PHE 6, Australian Institute of Health & Welfare (AIHW), Canberra, pp. vi – vii. UMR Research Pty Ltd 2003, Hawker Brittonare Omni Results, UMR Research Pty Ltd. Walker, Agnes 2003, Narrower Health Inequality in Australia – Impacts Simulated Using a Dynamic Microsimulation Model, paper from the 7th Nordic Conference on Microsimulation Models, Helsinki, Finland. Downloaded www.natsem.canberra.edu.au/new/newpubs.html Wilson, R. M., Runciman, W. B., Gibberd, R. W., et al 1995, ‘The quality in Australian health care study’, Medical Journal of Australia, Vol. 163, pp. 458 –471.
