A Healthier Future for all Australians - Final Report June 2009

5.1 Strengthened consumer engagement and voice

From Day One, we have said that the first and most important principle guiding health reform is that it must be ‘people and family-centred’. We use the term ‘people’ broadly and inclusively. People includes individuals, their families, carers, advocates and communities; and it extends to the many roles we have, whether as ‘consumers’, ‘patients’ or ‘citizens’.

The principle of ‘public voice and community engagement’ is a separate, although obviously related, dimension of a people-centred health system. We believe that the health system of the future should be organised around the integral roles of consumer voice and choice, citizen engagement and community participation. This is about giving people real control and choice about whether, how, where and when they use health services, supported by access to evidence-based information that facilitates informed choices. It is also about ensuring that the experience and views of consumers and whole communities are incorporated into how we redesign and improve health services in the future.

Through our consultations and submissions, we heard strong support for strengthening consumer engagement and voice in our health system:

5.1.1 Improving health literacy

However, we know that about 60 per cent of Australians are not able to effectively participate (exercise their ‘choice’ or ‘voice’) as they lack basic health literacy. That is, they lack the knowledge and skills to understand and use information about how to stay healthy or how to find their way around the health system. There is also clear evidence that lower health literacy can result in poor outcomes. People with poor health literacy have lower rates of screening for preventable health conditions, poorer experience in managing the health of their children, and difficulty in following instructions from their health care practitioner.¹⁶⁵

Accordingly, we have recommended that health literacy be included as a core element of the National Curriculum and incorporated in national skills assessment, applying across primary and secondary schools. Getting good information to our children is an effective way to boost our population’s health literacy.

We have also proposed targeted approaches to improving health literacy in particular domains, such as mental health literacy. For too long, people with mental illness have been stigmatised. We are recommending a sustained national community awareness campaign to tackle this issue. More generally, we believe that it is vital that governments, private health insurers, health services, non-government organisations and the media all contribute to improving health literacy among the general population. Helping people to ‘make healthy choices easy choices’ has to apply at all ages and across all groups in our population.

5.1.2 Fostering genuine participation

Of course, people need more than just the right information if they are to be active participants in shaping the health system. We need to have robust processes that promote and value the participation of the community in a meaningful, non-tokenistic way. We have recommended that there needs to be systematic use of mechanisms that allows the identification of different views – consumers, clinicians, managers, funders and others with a stake in the health system. Citizen juries are one approach to encouraging genuine deliberation on tough issues, such as how to allocate scarce resources among competing priorities.¹⁶⁶
We agree with the views articulated in one of our submissions:



Listening to the views of the community on health reform must be an ongoing commitment backed up by a robust process, which transcends the lifespan of short-term inquiries such as this one. We return to this issue in Chapter 7 where we outline the need for routine monitoring of the views of consumers and clinicians about their confidence in the health system.

Participation is also vital at a regional level, so that communities can influence and shape the way in which local health services are delivered. In particular, we know that many parts of rural Australia struggle to cope with multiple funding programs for health services that do not meet the needs of their local communities. For some of these communities, it is like the proverbial ‘square peg in the round hole’. There are multiple health ‘programs’, each with different eligibility criteria and guidelines, but these programs do not match what is actually required at the local level. We heard:


To make it easier for local communities to shape and get the right health services for their needs, we have recommended the use of flexible funding models in some remote and rural communities. This includes top-up funding (‘equivalence payments’) for primary health care services (earlier described in Section 3.2.5) and an expanded use of the so-called ‘multi-purpose service’ model. This allows small remote and rural towns (of about 12,000 people) to ‘cash out’ funding from multiple health and aged care programs that are now funded by the Commonwealth and state and territory governments. The pooled funding would then be used to allow health and aged care services to be more flexibly designed around the needs of local communities.

5.1.3 Becoming ‘extremists’ on patient decision-making

Donald Berwick, the American guru of quality in health care, recently challenged his fellow health practitioners to adopt some radical, and uncomfortable, ideas about what ‘patient-centred’ care should really mean.¹⁶⁹

For example, he suggests that evidence-based medicine ‘sometimes must take a back seat’ if clinicians are truly to respect the wishes of patients. And that ‘non-compliance’ legitimately reflects the different values and priorities that individuals have in their lives, as well as highlighting the challenge of better information exchange between clinician and patient.

While we have moved a long way from the ‘doctor knows best’ philosophy typified by the 1960s Doctor Kildare television series, we are still some distance from a health system that genuinely lets patients ‘call the shots’. Empowering consumers to make fully informed decisions is an important element of this shifting power balance between consumers and clinicians. For example, we recognise and support the increasing development of ‘decision aids’ that can be used to help patients make better informed decisions, incorporating their values and preferences about health treatment choices.¹⁷⁰

We also acknowledge the vital role of informal and family carers in supporting people in their use of health care services. Decision-making often involves more than the individual ‘patient’, so we have recommended that carers be supported through educational programs, mentoring and timely advice to allow them to participate in health decisions and communications (subject, of course, to the consent of those they care for). To sustain them in this role, carers must have better access to respite care.

One area where it is particularly important to give people more control relates to their decisions when they are dying. We know that for some dying patients and their families, the time of dying can be a chaotic experience with people transferred on an emergency basis to hospitals and receiving some treatments that may do little to improve their quality of life. Of course, what some people may consider to be ‘heroic’ treatment, other people would steadfastly insist should be provided to prolong their life. There are no hard and fast rules. This should be about individual choices, made in consultation with families and carers, but ultimately grounded in respecting people’s wishes about their dying.

We have recommended a national approach to funding and implementation of advance care planning to support people making informed decisions about their dying.¹⁷¹ We have suggested that this should commence in residential aged care services (and then be made available to other relevant populations). There is clear evidence that when older people living in residential aged care services participate in developing an advance care plan, they are much less likely to be transferred to, and die, in hospital.¹⁷² The implementation of advance care planning should include the provision of suitable training for the health and aged care workforce. We have also recommended that there be better education among health professionals of the common law right of people to make decisions about their medical treatment, including the right to decline treatment.

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¹⁶³Australian Commission on Safety and Quality in Health Care (2008), Submission 428 to the National Health and Hospitals Reform Commission: First Round Submissions.
¹⁶⁴National Prescribing Service (2008), Submission 431 to the National Health and Hospitals Reform Commission: First Round Submissions.
¹⁶⁵Agency for Health care Research and Quality (2004), Literacy and health outcomes: Evidence report/Technology Assessment No. 87, at http://www.ahrq.gov/downloads/pub/evidence/pdf/literacy/literacy.pdf
¹⁶⁶GH Mooney and SH Blackwell (2004), ‘Whose health service is it anyway? Community values in health care’, Medical Journal of Australia, 180 (2): 76-78.
¹⁶⁷Australian Medical Association (2008), Submission 445 to the National Health and Hospitals Reform Commission: First Round Submissions.
¹⁶⁸Rural Doctors Association of Queensland (2008), Submission 499 to the National Health and Hospitals Reform Commission: First Round Submissions.
¹⁶⁹D Berwick (2009), ‘What ‘patient-centred’ should mean: Confessions of an extremist’, Health Affairs, Web exclusive, published online, 19 May 2009. See also: P Chen (June 009) Letting the patient call the shots, New York Times, 4 June 2009, at: http://www.nytimes.com/2009/06/04/health/04chen.html?_r=3&ref=health
¹⁷⁰There has been considerable development in the United States of ‘shared decision making’ through the use of ‘decision aids’. This approach is being used for what are termed ‘preference-sensitive’ decisions which involve patients making value-based judgments about the benefits and risk of particular treatment options to them as individuals. Examples might include decisions about treatment options for an enlarged benign prostate, lower back pain, osteoarthritis of the knee or non-invasive breast cancer. See: A O’Connor et al (2007), Toward the ‘tipping point’: Decision aids and informed choice, Health Affairs, 26(3): 716-725; 10:1377/hlthaff.26.3.716.
¹⁷¹An advance care plan allows people to identify on a step-by-step basis how they want their symptoms managed and their treatment preferences.
¹⁷²An evaluation of one approach to advance care planning (the Respecting Patient Choices program which was initially implemented across 17 residential aged care services and two palliative care services) found that 85 per cent of people with an advance care plan were able to ‘die in place’ in their aged care service, while 67 per cent of people without an advance care plan were transferred to, and died, in hospital. See: W Silvester and colleagues (2008), Submission 18 to the National Health and Hospitals Reform Commission: First Round Submissions.