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Shared decision making in Australia in 2011 Kirsten J. McCaffery1,3,∗ , Sian Smith1,3 , Heather L. Shepherd1,3,6 , Ming Sze2,3 , Haryana Dhillon3,4 , Jesse Jansen1,3 , Ilona Juraskova2,3 , Phyllis N. Butow2,3 , Lyndal Trevena1 , Karen Carey5 , Martin H.N. Tattersall3,4 , Alexandra Barratt1,3 1 School
of Public Health, University of Sydney, NSW 2006, Australia of Psychology, University of Sydney, NSW 2006, Australia 3 Centre of Medical Psychology and Evidence based Decision making (CeMPED), University of Sydney, NSW 2006, Australia 4 Department of Cancer Medicine, Blackburn Building, University of Sydney, NSW 2006, Australia 5 Former Chair Health Consumers Council of Western Australia and Member Consumer Health Forum Canberra, Perth, WA, Australia 6 School of Public Health and Community Medicine, University of New South Wales, NSW 2052, Australia 2 School
Summary The paper describes the current position of shared decision making (SDM) within the Australian healthcare system. SDM policy in Australia: Support for SDM exists through guidelines and policy documents, and is strongly endorsed by consumer organisations; however, there is no clear overarching policy framework for SDM in Australia. Tools for SDM: There are limited tools available for SDM in clinical practice. Access to tools exists through some Australian health research and consumer organisation websites but the use of tools remains idiosyncratic. Implementation of SDM: Comparatively little has been achieved in the implementation of SDM in Australia. Although there is wide recognition that consumer involvement in health decisions is important, provision of
resources and infrastructure to achieve it is limited, and there is no clear strategy to support implementation within the healthcare system. SDM in the future: Current reforms to the healthcare system may enable a more centralised approach to implementation of SDM in the future. A new federally funded consumer health information organisation may assist by providing a central point through which SDM interventions may be made available to the Australian public and the Australian Charter of Rights has the potential to provide a national framework for consumer involvement. However, priority needs to be given to SDM by both federal and state governments with greater investment in SDM research and in activities to support implementation in clinical practice.
Key words: Shared decision making, patient participation, consumer participation, Australia, implementation of shared decision making (As supplied by publisher)
Partizipative Entscheidungsfindung in Australien im Jahr 2011 Zusammenfassung Der vorliegende Beitrag beschreibt der Partizipativen Entscheidungsfindung Gesundheitssystem.
den aktuellen Stand (PEF) im australischen
Gesetzliche Regelungen zur PEF in Australien: Die Unterstützung für PEF erfolgt im Rahmen von Leitlinien und Strategiepapieren und wird von Verbraucherorganisationen auf das Stärkste befürwortet; allerdings gibt es
∗ Corresponding
author. Kirsten J. McCaffery, School of Public Health, University of Sydney, NSW 2006, Australia. Tel.: +61-2-9351-7220; Fax: +61-2-9351-5049. E-Mail:
[email protected] (K.J. McCaffery).
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in Australien kein eindeutiges und übergreifendes politisches Rahmenwerk für die PEF. PEF-Instrumente: In der klinischen Praxis sind PEF-Instrumente in begrenzter Anzahl verfügbar. Diese Instrumente sind über die Internetseiten verschiedener australischer Gesundheitsforschungs- und Verbraucherorganisationen zugänglich, ihr Gebrauch ist bislang allerdings eher idiosynkratisch. Implementierung von PEF: Im Bereich der Implementierung von PEF ist in Australien vergleichsweise wenig erreicht worden. Obwohl weithin anerkannt wird, dass die Beteiligung der Verbraucher an gesundheitlichen Entscheidungen wichtig ist, sind die Ressourcen und die Infrastruktur, die für die Erreichung dieses Ziels bereitgestellt werden, begrenzt, und es gibt keine klare Strategie zur Unterstützung der Implementierung von PEF im Gesundheitsversorgungssystem.
PEF und die Zukunft: Die gegenwärtige Reform des Gesundheitswesens ermöglicht zukünftig unter Umständen ein stärker zentralisiertes Vorgehen bei der Implementierung von PEF. Eine neue staatlich geförderte Organisation für die Erstellung von Gesundheitsinformationen für Verbraucher könnte als zentrale Anlaufstelle fungieren, über die PEF-Interventionen der australischen Öffentlichkeit zugänglich gemacht werden. Die australische ,,Charter of Healthcare Rights‘‘ (Gesundheitscharta) hat das Potenzial, einen nationalen Rahmen für eine Verbraucherbeteiligung im Gesundheitswesen zu schaffen. Allerdings müssten die Regierungen auf Bundes- wie auch bundesstaatlicher Ebene der PEF größere Priorität einräumen und stärker in PEF-Forschung sowie PEF-Aktivitäten investieren, um die Implementierung von PEF in der klinischen Praxis zu unterstützen.
Schlüsselwörter: Partizipative Entscheidungsfindung, Patientenbeteiligung, Verbraucherbeteiligung, Australien, Implementierung von Partizipativer Entscheidungsfindung (Wie vom Gastherausgeber eingereicht)
Introduction Australia has a population of approximately 22 million people, living in eight States and Territories. The Australian health care system is directed and funded at both a national (via the Australian government) and regional level (via State and Territory governments), and includes a mixture of public and private health service delivery. For example, public hospitals are funded and run by government alongside private hospitals which are run for profit by companies (Australian and international). Approximately 40% of the Australian community pays private health insurance to cover inpatient care in private hospitals. General practice (GP) services are provided on a fee-for-service basis, with rebates provided by the Federal (national) Government through the universal insurer, Medicare. Medicare is the Australian health insurance system that also provides free access to outpatient health services, including allied health services, optical and dental care.
Implementing SDM in the Australian Health Care System The Australian health system makes implementation of SDM difficult due to the division of funding and responsibility between the Australian national versus state and territory funded health care. Public hospitals are operated within regional state-based divisions and are funded by state and territory government. This results in variation in
practice between hospitals, and the division of responsibility encourages fragmented care, cost shifting and ‘‘blame games’’ over inadequate funding for health services. In primary care GPs are reimbursed by the Commonwealth via an itemized service register and there is no rebate for SDM or a SDM consultation. The average GP consultation in Australia is 15 minutes, which may be insufficient for SDM (and has been highlighted as an important barrier to SDM by GPs in research – see below). A particular challenge for the implementation of SDM and the provision of high quality health services is distance in rural and remote communities. The recent report by the Australian Institute of Health and Welfare (AIHW) [1] showed that people in these communities have substantially less equitable access to health services. Rural cancer patients experience more problems accessing health information and need more help to interpret it [2,3]. In one study less than 30 percent of rural breast cancer patients had received information about services available to them, suggesting that SDM may be very limited [2]. Another challenge is the cultural diversity of the population. The 2006 census [4] showed that 24% of Australians were born overseas and 2.8% of the total population spoke English poorly or not at all. Recent research has found that culturally and linguistically diverse (CALD) communities hold different beliefs about cancer to Anglo Australians and may prefer information and treatment decisions to be
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filtered through the family (publication in preparation). The Aboriginal and Torres Strait Islander population (commonly referred to as Indigenous) of Australia is another disadvantaged group and constitutes 2.4% of the total population. This group has the poorest health outcomes of any ethnic/cultural group in Australia [5], and more evidence is needed to inform improved health care generally, as well as SDM.
Health System related barriers to SDM In 2006 the National Health and Medical Research Council (NHMRC) identified the following system barriers to effective consumer participation in Australia [6]: i) the infrastructure of organisations often does not support consumer participation, ii) organisations lack skills and confidence in collaborating with consumers, iii) consumers need skills in presenting and advocacy, iv) vulnerable groups have little opportunity for input, v) weak links between health information developers, consumers and community organizations, and vi) dissemination of health information often occurs without consumer input. Although this report was written in 2006, there has been little attempt to seriously tackle any of the barriers it identified. Further research reports time constraints as the most commonly cited health system barrier to SDM, particularly in nursing and general practice [7]. Other reported system barriers are
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division of labour and difficulties in relinquishing power/authority [7], excessive administrative requirements [8], lack of broad consultation in developing materials and patient preferences for clinician-provided advice rather than self-administered decision aids [9].
Australian Health care reform The Australian Federal government is currently in the process of the National Health and Hospitals Network (NHHN) reforms. Central to the reforms is national funding for hospital and outpatient primary care. The reforms have the potential to provide an impetus to improve the implementation of changes to health care across the patient pathway, as the reorganisation aims to interlink facilities and services so that it is easier for patients to navigate the health system. This may assist the implementation of SDM interventions in Australia in the future. However, the specific details of the reforms are currently unknown.
A national strategy for increasing consumer engagement On 22 July 2008, the Australian Health Ministers endorsed the ‘Australian Charter of Healthcare Rights’ and recommended its use nationwide [10]. The Charter outlines the roles of consumers, health professionals and health service organisations across seven facets of healthcare. Of relevance to this paper, it states, ‘‘To obtain good health outcomes, it is important for patients and consumers to participate in decisions and choices about their care and health needs. This provides the basis for informed consent and informed decision making’’. Patients are encouraged to take an active role in their healthcare and to participate as fully as they wish in decisions about their care and treatment; to seek a second opinion if uncertain, to give or withhold permission for treatment and to consider involving family and others to support their decision making. Likewise, health
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professionals are required to encourage consumers to make fully informed decisions by discussing options, outcomes, success rates and side effects and advising patients of their right to refuse or withdraw from treatment; to ensure appropriate consent for care within teaching and research settings; and to respect the role of family and other support people in healthcare. On the other hand, health service organisations are required to develop and maintain policies that support these active participation processes and to involve consumers in health service policy and planning decisions. The Charter is available in Braille, audio and in 17 community languages. This stance is also reflected in the strategic directions of the Australian Commission on Safety and Quality in Health Care (ACSQHC) [11] and most recently, the Australian National Health and Hospital Reform Commission (NHHRC) [12]. In 2010, the ACSQHC released the first discussion paper to review patient-centred care developments in the Australian health care system [13]. In this paper, greater consumer engagement in decision making and increasing health literacy were considered as key strategies for achieving patient-centred care. Similarly, the NHHRC’s most recent report, ‘A healthier future for all Australians’ emphasises the importance of increasing consumer engagement and voice in the Australian health care system, stating that people should have ‘access to evidence-based information that facilitates informed choices.’ Further, the report recommends that ‘building health literacy’, ‘fostering community participation in policy and practice health reform’ and ‘empowering consumers to make fully informed decisions’ should be central to any efforts designed to support greater consumer involvement in health care [12]. The report also states that ‘‘we recognise and support the increasing development of ‘decision aids’ that can be used to help patients make better informed decisions’’. At the same time, the report acknowledges that not all patients have the skills to successfully engage in SDM,
with growing evidence that a large proportion of the Australian adult population have difficulties performing literacy and numeracy tasks encountered in everyday life. The 2006 Adult Literacy and Life Skills survey reported that up to 60% of the general population have inadequate health literacy skills [14]. This suggests that many Australians do not possess the knowledge and skills that are important for understanding and using health information, and navigating health services so that they can adequately participate in SDM [15].
National initiatives supporting patient participation and SDM The Consumers Health Forum of Australia (an independent member-based non-government organisation, funded by the Australian Government, http://www.chf.org.au), together with other consumer groups (Health Care Consumers Association of the ACT, Health Consumers Alliance of South Australia, Health Consumers’ Council of Western Australia, Health Consumers Queensland, and Health Issues Centre (Victoria)) commented on key areas of common interest to consumers in response to the NHHRC’s review [12]. These included consumer engagement and involvement, which the joint CHF response reiterated should be facilitated through improved health literacy, fostering community participation and empowering consumers. The Consumer’s Health Forum provides and advocates for consumer representation with government, industry and professional organisations. In 2010 a new project Our Health, Our Community received funding to inform, engage and resource consumers to work in partnership with Government, State and Territory jurisdictions and stakeholders to deliver better health outcomes through the NHHRC’s reform initiatives [16]. These new initiatives may go some way to help the Australian public to promote SDM from the consumer side of the health professional / patient partnership. Another initiative, Health Direct (including HealthInsite) supported by
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the Australian Government and several state governments, includes a 24-hour health advice line and an online health information service (http://www.healthdirect.org.au/). As well as being a source of consumer health information, Health Direct includes advice on questions to ask your health professionals and reviews of evidence for treatments. This is a step towards empowering consumers to engage in SDM with health professionals; although public knowledge of this website is not widespread, it is growing. Several peak cancer bodies in Australia have made policy statements about patient participation and SDM. For example, Cancer Australia, a national cancer agency funded by the Department of Health and Aging, has as a current priority to enhance support, information and participation in decision making for people affected by cancer [17,18]. Cancer Australia’s strategies and programs include: prioritising consumer participation in Cancer Australia’s advisory and working groups and producing consumer resources for individuals and groups. Resources include a Consumer participation guide and Consumer training and mentoring guide [19,20]. The NHMRC has also begun a push for consumer versions of treatment guidelines. These acknowledge the consumers’ right to gain direct value from research, to benefit from the development of guidelines, and to participate in SDM. A further strategy implemented by the Therapeutic Goods Association [21] is access to online information for all prescription medicines; this also demonstrates recognition of the need for consumers to access information early to participate in SDM. A number of clinical practice guidelines also feature SDM (e.g. [22]). However, little detail is provided on how to implement SDM in practice.
Implementation of SDM in practice Although consumer participation is part of Australian health policy,
implementation is currently limited. Medical and nursing curricula are moving to integrate these principles with some effect [23] and health services are trying to benchmark strategies that facilitate its implementation [24]. Health professionals in many parts of the system (e.g. mental health) are looking for resources such as freely available decision aids to support SDM [25]. Training for clinicians in implementing SDM is not routinely available. While there have been efforts in Australia to develop isolated tools and materials to facilitate SDM (e.g. patient decision aids and question prompt lists: http://www.psych.usyd.edu.au/ cemped/), there is no national strategy or structure to support their implementation into practice. Some state governments support SDM. The Victorian Department of Health supports a range of initiatives which promote and support consumer involvement in decision making about their own treatment and care, in service development and quality improvement, and more broadly, in health policy developments (see 2010-13 ‘Doing it with us not for us’ policy [26]). The document incorporates a new set of participation performance indicators for health services which were developed with health services and consumers, carers and community members, and cover priorities at the individual, health service and Departmental levels.
The SDM Research Agenda Australian consumer involvement in health research Australian health research funding agencies continue to work towards increased consumer involvement. Whilst this has often been rhetorical and tokenistic in the past, strategies are slowly emerging to move consumer involvement beyond a ‘rubber-stamping’ role on steering committees towards more active involvement in research, within both non-government and government-funded agencies. However, Australia’s major govern-
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ment research body, the NHMRC, is still working towards the implementation of the 2002 ‘‘Statement on Consumer and Community Participation in Health and Medical Research’’ [27] and the 2005 ‘‘Model Framework for Consumer and Community Participation in Health and Medical Research’’[28] and ‘Resource Pack’ designed to promote a model of partnership between consumers and researchers. An example of implementation in the non-government sector is ‘Alzheimer’s Australia’, which has an active Consumer Dementia Research Network (CDRN) with a mandate to be involved in priority settings, project evaluation, monitoring and dissemination of results [29]. Cancer Australia also provides an exemplar policy from the government-funded sector [19]. Consumers also have a mandatory role within National Ethics Framework for Human Research with consumer membership from a national down to a local committee level. Under the national framework, all research ethics committees must have a minimum of two laypersons (one male and one female) within their membership [30].
Researchers, research priorities and funding A small number of research groups and individuals are working in the area of SDM or patient choice. Nevertheless Australian research has made some important contributions, for example in patient-doctor communication [31–34], risk communication [35], consumer and patient preferences [36,37] and evidence-based patient choice [37–41] Overall, there is a lack of recognition of research related to SDM or patient choice in the priorities set by the Australian government. The Australian government has articulated four National Research Priorities, only one of which pertains to health (Promoting and Maintaining Good Health) [42]. National health priorities have been identified by the AIHW, but these all relate to chronic health issues [43]. Funding for SDM research is very limited at a national level. In 2010 the NHMRC (the main avenue
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of funding for researchers) funded only two project grants that appear to directly address issues of patient choice out of a total of 745 project grants, 15 Centres of Research Excellence and 10 Program grants. A similarly low level of funding was found from the Australian Research Council (ARC) which funds some health research (if it is of benefit to the community generally). One grant was found to relate to patient choice and empowerment [44].
Conclusion As we concluded in our previous article on SDM in Australia [45], there is still a long way to go to ensure patients are both informed and involved in decisions about their health. To date, there are many policy documents espousing the value and importance of consumer involvement and SDM, however, implementation remains limited. Yet, there are positive signs, with a growing interest from government in health literacy in which empowering consumers and enabling them to be active participants in their healthcare is seen to be a core component. The Australian Charter of Healthcare Rights is an important advance and Health Direct now offers centralised point through which health information and resources can be made available to all Australians. However, the challenges of inequity remain with rural, remote and Aboriginal and Torres Strait Islander communities vastly underserved in their access to even basic health services. Government funding for SDM research and implementation initiatives continue to be limited.
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Statement on conflict of interest We hereby declare there is no conflict of interest according to the Uniform Requirement for Manuscripts Submitted to Biomedical Journals.
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