Z.arztl. Fortbild. Qual.Gesundh.wes. (ZaeFQ) 101 (2007) 205211

ve

Abstract

keinen klaren politischen Rahmen fur PEF in Australien. Daraus folgt dieErkenntnis, dass die Einbeziehung von Patienten zwar wichtig ist,

lungen zur Inanspruchnahme von Information und Einbeziehung in dieGesundheitsversorgung angezielt werden sollte.

ninformation, Partizipative Entscheidungsfindung, Gesundheitssystem, Australien

Wie vom Gastherausgeber eingereicht

www.elsevier.de/zaefq

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$Sydney Health Decision GroupCorresponding author: Kirsten McCaffery. Tel.: 61 2 9351 7220; Fax: 61 2 9351 5049.

E-Mail: kirstenm@health.usyd.edu.au (K.J. McCaffery)

Z.arztl. Fortbild. Qual.Gesundh.wes. (ZaeFQ)doi:10.1016/j.zgesun.2007.02.025 205Schlusselworter: Patientenbeteiligung, PatienteKey words: Patient participation, patient information, shared decision-making, health care system, Australia

As supplied by publisher

Partizipative Entscheidungsfindung in Australien

ZusammenfassungDiese Arbeit beschreibt den derzeitigen Stand der Partizipativen Entschei-dungsfindung (PEF) im australischen Gesundheitssystem. Das australischeGesundheitssystem besteht aus einer Mischung von offentlichen undprivaten Gesundheitseinrichtungen, die von regionaler und nationalerPolitik gefuhrt werden. Unterstutzung fur PEF existiert durch Leitlinien unddurch Interventionen, die Patientenbeteiligung erhohen. Jedoch gibt es

allerdings sind die Ressourcen und die Infrastruktur begrenzt und es gibtkeine klare Strategie die Umsetzung der PEF zu unterstutzen. Es werdendie Hurden fur PEF auf Makro-, Meso- und Mikroebene beschrieben. Diederzeitigen Anstrengungen, die Patientenbeteiligung zu unterstutzen,beziehen sich auf die Angebotsseite der Gesundheitsversorgung. Mittle-rweile wurde erkannt, dass die Seite der Nachfrage durch Patientenschu-This paper describes the current position of shared decision-making (SDM)within the Australian health care system. Australian health care includes amixture of public and private practice governed by both regional andnational policy. Support for SDM exists through guidelines and support forinterventions to increase participation. However, there is no clear overallpolicy framework for SDM in Australia. The result is recognition thatconsumer involvement is important yet there are limited resources andinfrastructure, and no clear strategy to support implementation. Barriers toSDM at the macro, meso and micro levels of health care are described.Efforts to support consumer involvement to date have been targeted tothe supply side of health care. There is now awareness of the need totarget the demand side by educating consumers to ask for informationand involvement in their health care.Former Chair Health Consumers Council o5Department of Cancer Medicine, BlackburnPhyllis N Butow2,3, Karen Carey Hazell4, Martin HN Tattersall2,5

1School of Public Health, University of Sydney, NSW 2006, Australia2Medical Psychology Research Unit, Blackburn Bld (DO6), University of Sydney, NSW 2006, Australia3Medical Psychology Research Unit, School of Psychology, Brennan McCallum Bld (A18), University of Sydney, NSW 2006, Australia4 f Western Australia and Member Consumer Health Forum Canberra, Perth, WA, Australia

Bld (006), University of Sydney, NSW 2006, Australia.Shared decision-makingKirsten J McCaffery1,, Heather L Shepherd2, Lyndal Trein Australia$na1, Ilona Juraskova2,3, Alexandra Barratt1,Schwerpunkt

Australia has a population of approxi-mately 20 million people, living in eight

rebate provided through Medicare.

at all levels and across all types ofhealth and medical research in Austra-

2. Present state of SDMimplementation in the

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rtbMedicare is the Commonwealth fun-ded Australian health insurance systemthat provides universal access to healthservices. Private health insurance coversfees for private hospitals and selecteddoctors in public hospitals, in additionto allied health services, optical anddental care. This paper describes thecurrent position of shared decisionmaking (SDM) within Australian healthcare system.

1. Level of patientparticipation in macro,meso and micro levels

The Australian Government Depart-ment of Health & Ageing receivesadvice and recommendations from theNational Health & Medical ResearchCouncil (NHMRC) which involves con-sumers via appointment of consumerrepresentatives to committees and con-ducting public consultations beforemaking regulatory recommendationsor issuing guidelines. In 2002, theNHMRC together with the ConsumersHealth Forum of Australia (see furtherdetails below) published the Statementon Consumer and Community Partici-pation in Health and Medical Research;guidelines for consumer participation

206States and Territories (regions) in anarea approximately the size of WesternEurope. The Australian health caresystem is directed and funded at botha national and regional level, andincludes a mixture of public and privatehealth service delivery. The State andTerritory governments fund a broadrange of regional health services. TheCommonwealth (or Federal) govern-ment fund most medical services outof hospital and most health researchnationally. The Commonwealth pro-vides non-directed funds to the Stateand Territories to administer publichospitals. Both the Commonwealthand the State and Territory govern-ments variously fund community carefor aged and disabled persons. Generalpractice (GP) services are provided on afee-for-service basis with an 85%lia [1]. The statement includes someprinciples of partnership of consumersand researchers in order to shapedecisions about research priorities, spe-cific research questions and design ofresearch projects in a way that recog-nises and responds to the rights of allvoices to be heard.Australia has seven national healthpriorities receiving targeted funding;asthma, cardiovascular disease, dia-betes, cancer control, injury prevention,arthritis and mental health. Several ofthese have programs for patient self-management. The Australian Govern-ment also has an extensive consumerhealth information website calledHealth Insite [www.healthinsite.go-v.au] whose strategic plan specificallyaims to involve consumers in the devel-opment and evaluation of the site. StateHealth Departments also have policiessupporting consumer and communityinvolvement in decision-making, plan-ning, development and evaluation ofservices. The Western Australia (WA)Department of Health and the HealthConsumers Council of WA [http://www.hccwa.global.net.au/pages/pol-icy_comment.html] have recently signeda state Consumer Participation Policythat require all levels of healthcareadministration, from local public hospi-tals to Clinical Networks and decision-making committees to include at leastone consumer representative.The Consumers Health Forum of Aus-tralia [http://www.chf.org.au] is anindependent member-based non-gov-ernment organisation which is fundedby the Australian Government. It nomi-nates and supports consumer represen-tation with government, industry andprofessional organisations. A numberof condition-specific non-governmentorganizations (NGOs) also have keyadvocacy roles and these also involveconsumers. NGOs include the NationalBreast Cancer Centre, Diabetes Austra-lia, Cancer Australia and Cancer Coun-cils in each state, Beyond Blue (mentalhealth), Arthritis Foundation, andNational Heart Foundation. Australiahosts the Cochrane CollaborationsConsumer and Communication Group.

Z.arztl. FoAustralian Health CareSystem

Shared decision-making is espoused inmany policy and strategic directiondocuments, such as the NHMRC seriesof booklets on doctor-patient commu-nication. Making decisions about testsand treatments: Principles for bettercommunication between healthcareconsumers and healthcare profession-als http://www.nhmrc.gov.au/publica-tions is a new toolkit intended to assisthealth professionals with optimisingcommunication when discussing treat-ment options with consumers. On p. 1,it states:

Whenever possible, people seekinghealth advice should have opportunitiesto explain and discuss their values andpreferences, so that the decisionsreached can take these into account.

The Australian Council for Safety andQuality in Health Care have also pro-duced a document, 10 Tips for SaferHealth Care, [http://www.safetyand-quality.gov.au/internet/safety/publish-ing.nsf/Content/10-tips] available in 15languages, which aims to help peoplebe more actively involved in their ownhealthcare [2]. A draft Cancer ServicesStandards Framework has also beendeveloped stating that [3]

all cancer patients are involved indecisions concerning their care to theextent that they wish p.172.

While there is apparent support forSDM in Australia, implementation islimited. A survey of Australian oncolo-gists found that 80% were comfortablewith SDM but only 53% reported it astheir usual approach, and many statedthat they used it only with somepatients [4] (Fig. 1).Brown et al. [5] audited SDM in 59consultation audio-recordings of 10oncologists seeking consent to clinicaltrials. Doctors only introduced theconcept of joint decision-making abouttreatment in 24% of consultations and,where it was discussed, it was rated aspoor in 75% of cases. Information

ild. Qual.Gesundh.wes. 101 (2007) 205211www.elsevier.de/zaefq

document states, Be actively involvedin your own healthcare. [2]

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ial.preferences were checked in 40% ofthe consultations with 66% of thesereceiving a poor rating. The doctorsinvited patient questions and com-ments in 61% of the consultations;however, 70% of these were rated aspoor. Uncertainty of treatment benefitwas acknowledged in 54% of consul-tations. Patients were, however, com-monly offered the option of delayingtheir decision about trial participation(78% of consultations). Thus, manyaspects of SDM were rarely observed inthis sample of oncology consultations.Focus group interviews and participantobservation methods explored nursesapproaches to working with patients tosupport patients participation in healthcare [6]. The authors noted a sharpcontrast between the ideas nursesexpressed and their actions observedin practice. Nurses said they supported

Fig. 1. Australian Mammography Decision Aid Trdecision_aids.phpconsumer participation, yet observa-tional data revealed nursing practicesthat excluded active participation byconsumers. In conclusion, evidence forthe implementation of SDM is sparse,and the few studies that have beenconducted do not support optimismabout the uptake of these ideas.

3. Mechanisms andinstitutions which supportSDM in practice

Support for shared decision-making inAustralia exists through guidelines and

Z.arztl. Fortbild. Qual.Gesundh.wes. 101 (2007)www.elsevier.de/zaefqsupport of interventions which aim toincrease participation. Three NHMRCpublications specifically promotepatient involvement in decision makingas part of optimal care [79] http://www.nhmrc.gov.au/publications.

The Royal Australian College of GeneralPractitioners (RACGP) document Shar-ing Health Care: Chronic ConditionSelf-Management Guidelines alsoasserts that,

When treatment is jointly planned andnegotiated, and information is sharedbetween doctor and patient, the patientis assisted to exercise autonomy andfollow an agreed plan [10]

http://www.racgp.org.au/guidelines/sharinghealthcare

http://www.health.usyd.edu.au/shdg/resources/These publications are complementedby a number of other consumer-ledinitiatives. The Patient Charter pro-duced by the Victorian State Govern-ment states that;

You should be fully involved in deci-sions about your care and be given theopportunity to ask questions and dis-cuss treatments so you understandwhat is happening.

http://www.health.vic.gov.au/patient-charter/patient.htm

Tip One of The Australian Council forQuality and Safety in Health Care

(Fig. 2).

205211Question Prompt Lists (QPL): Questionprompt lists aim to aid the patient inobtaining the information s/he maywant by listing questions pertinent totheir situation [1216]. The CancerInstitute New South Wales is fundinga project to evaluate the implementa-tion of QPL for cancer patients consult-ing a surgeon, radiation or medicaloncologist or a palliative care doctor inNew South Wales. Palliative Care Aus-tralia has disseminated a QPL forpatients consulting a palliative caredoctor [http://www.pallcare.org.au].

207the Sydney Health Decision Group(SHDG) to produce a DA for womenconsidering hormone replacementtherapy. Copies were distributed toGPs across Australia and can be down-loaded from the internet [http://www.nhmrc.gov.au/publications] [11]Onnatly one DA has been implementedionally. The NHMRC commissioned

treatment decisionsClinical trial participationPamphlets produced by consumergroups, particularly in the oncologysetting, promote patients active parti-cipation in their healthcare. (e.g. MyJourney Kit, developed by Breast Can-cer Network Australia http://www.bcna.org.au/). Cancer Voices Australiaalso links advocacy groups across thecountry and aims to ensure cancerconsumers are involved in decisionmaking regarding treatment, research,support and care throughout theircancer journey.

Implementation of tools and interven-tions to increase patient participation

Decision Aids: In Australia decision aids(DAs) have been developed for a num-ber of different settings.

Health screening Genetic counselling Disease preventionCancer early and advanced stage

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hoAudio-recording consultations:

The value of audio-taping has beenexplored and has proven of value inallowing patients to clarify details ofprevious consultations, as well as togive further opportunity to absorb theplethora of information given in anyconsultation. [17,18] The Cancer Insti-tute NSW has recently funded a systemin two public hospitals in Sydney whichenables recording of the consultationand instant transfer to a CD whichpatients can take home.

4. Barriers to SDM inAustralia

There is little research in Australiaidentifying barriers to implementationof a SDM approach. In a systematic

Fig. 2. NHMRC. Making Decisions: Should I usereview (19902006) of health profes-sionals perceptions of barriers to SDMpractice, only one of the 28 identifiedstudies was conducted in Australia[19].

System related barriers

In the recent Guide to effective parti-cipation of consumers and communi-ties in developing and disseminatinghealth information [20], the followingsystem barriers to effective consumerparticipation were identified: i) theinfrastructure of organisations often

208does not support sufficient consumerparticipation, ii) organisations may lackskill and confidence in collaboratingwith consumers, iii) consumers mayneed skills in presenting and advocacy,iv) vulnerable groups may have littleopportunity for input, v) there maybe weak links between health informa-tion developers and consumers andcommunity organizations, and vi)dissemination of health informationoften occurs without consumer input.Equity, transparency and good commu-nication skills relating to purpose andprocess have been identified as keystrategies in overcoming these barriers[20].The most commonly cited barrier toimplementation of a SDM approach inAustralia has been time constraints,identified as a critical issue in nursingand general practice [6]. Other repor-

rmone replacement therapy?ted system barriers are division oflabour and difficulties in relinquishingpower [6], excessive administrativerequirements [21], lack of broad con-sultation in developing materials andpatient preferences for clinician-provi-ded advice rather than self-adminis-tered decision aids [22].A particular challenge in the implemen-tation of SDM in Australia is theequitable provision of services forpatients in rural and remote areas[23]. A key issue was geographicalisolation from centres of evidence-based practice, limited choice of healthcare practices for referral, and fewer

Z.arztl. Fortbresources, compared to the urbanclinical practice.In total, many of the SDM initiativesthat have occurred have done so in theabsence of any clear, overall policyframework [24]. Consequently, thereare gaps in specific clinical areas thatare not covered by existing guidelines[25].

Health professional barriers

The NHMRC document, Communicat-ing with Patients: Advice for MedicalPractitioners [8], identifies doctor-rela-ted obstacles to adequate communica-tion. Research with oncologists alsoreports barriers to SDM including lackof time, perception that patients mis-understand the treatment/disease, con-cerns about increasing patients anxiety,and not having sufficient evidenceabout the efficacy of specific treat-

ments [4].Studies indicate that the doctors con-sultation style is an important compo-nent of the decision-making process[26,27] and varies among practitioners.These findings suggest that communi-cation skills training in university med-ical curriculae would be beneficial. TheOncology Education Committee of theCancer Council Australia recently laun-ched the Ideal Oncology Curriculum formedical schools: Knowledge, skills andattitudes of medical students at gra-duation; in which communication skillsare identified as one of the core skillsand competencies in oncology that

ild. Qual.Gesundh.wes. 101 (2007) 205211www.elsevier.de/zaefq

graduating medical students shouldpossess. The Australian Medical Coun-

ful of, and sensitive to, the back-

5. Influence of patientrights on SDM

treatments or those with specific healthconditions have raised the profile of

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07)ground, emotional and cultural needsof each individual patient. Most doctorslack skills in this area [32].

Consumer/patient related barriers

A number of barriers have been identi-fied; anxiety, embarrassment or denialabout the medical condition; beinginexperienced in identifying anddescribing symptoms; being intimida-ted by healthcare settings; being over-awed by the doctors perceived status;being disadvantaged by differences inlanguage and culture; being confusedby the use of medical jargon; beingreluctant to ask questions; or beingconcerned about taking up too muchtime [8].Low literacy skills are another impor-tant barrier. Data from 1996 by theAustralian Bureau of Statistics indicatethat almost half the Australian popula-tion is likely to have some, or consider-able, difficulty with written informationmaterials [33]. There have been noattempts to develop tools or materialsto facilitate SDM with low literacygroups in Australia.

Z.arztl. Fortbild. Qual.Gesundh.wes. 101 (20www.elsevier.de/zaefqcils Accreditation Standards for Medi-cal Schools (2002) advise that all med-ical graduates should involve patients informulating a management plan, andshould be good listeners and able toprovide information in a manner thatallows patients and families to be fullyinformed.Culturally diverse communities havevarying perceptions of informationexchange and decision making whichmay pose an important barrier to SDM[2830]. Goldstein et al. [28] foundthat a Greek community in Australiapreferred a greater involvement of thefamily in decision-making and a morepaternalistic style in their doctor. Astudy of Aboriginal consumers reportedthey wanted GPs to spend more time inconsultations to get to know them andto foster a relationship with the Abori-ginal community outside of the GPpa-tient encounter [31]. In general, com-munication is facilitated when thehealth professional is aware of, respect-implementation

There is no national patient charter orpatient rights statement in Australiasuch as exists in the UK (NHS PatientsCharter http://www.pfc.org.uk/node/633) and elsewhere. In 1993 theNHMRC issued general guidelines formedical practitioners on providinginformation to patients (updated in2004) [7]. The guidelines hold nolegislative power, rather they are seento reflect the Australian common lawright of legally competent patients tomake their own decisions about med-ical treatment and their right to grant,withhold or withdraw consent beforeor during and examination or treat-ment (NHMRC 2004 p7).Mental health policy and legislation hasdemonstrated a rights-based approachto patient participation which has beenexplicitly incorporated into the MentalHealth Act (1990) and the MentalHealth Legislation Amendment Act(1997). Individual state and area basedhealth services (e.g. Victorian and WAState Governments (see weblinks pre-viously listed), North Coast Area HealthService NSW; http://www.ncahs.nsw.-gov.au/support/), and some hospitals(Royal Childrens Hospital, Queensland;http://www.health.qld.gov.au/qhppc/documents/QHPPCbooklet.pdf havevoluntarily established their own indivi-dual patient charters. Health CareAgreements between the federal andstate governments have meant thatstates must develop and implementsystems to ensure that patients giveinformed consent. However patientparticipation in decision-making is lim-ited by a serious deficiency in theunderstanding of healthcare practition-ers and administrators as to whatinformation constitutes informed con-sent, how and when it should beprovided, and what decision-makingsupport patients (and clinicians) require[34].Consumer activism has played animportant role in campaigning forchange in Australia [35]. Groupsformed by patients of failed healthcare

205211The Australian government has articu-lated four National Research Priorities,one of which pertains to health. Withinhealth the specific research prioritiesare described as follows:

A healthy start to life Ageing well, ageing productively Preventive healthcare Strengthening Australias social andeconomic fabric

[http://www.dest.gov.au/sectors/research_sector/policies_issues_re-views/key_issues/national_research_priorities/priority_goals/promoting_and_maintaining_good_health.htm#4#4]

However, none of these include provi-sion for a research priority relating toSDM or patient choice.

Research funding

The NHMRC funded 853 grantsamounting to $500 million to com-mence in 2007. Only two specificallyaddressed patient choice: Gattellariet al., DESPATCH Delivering Stroke

209Research goals and prioritiespatient choice [4346].

ences [43,44] and evidence based

[41patient rights [36]. Identity based con-sumer groups such as Aboriginalgroups and womens groups also playan important role [37,38]; as have largeNGOs and national consumer organisa-tions described in Section 1.

6. Present SDM-researchand research funding

Researchers and Research groups

A small number of research groups andindividuals are working in the area ofSDM or patient choice. NeverthelessAustralian research has made someimportant contributions, for examplein patient-doctor communication[5,15,26,39,40], risk communication

,42], consumer and patient prefer-

Prevention in Atrial Fibrillation: assistingevidence based choice in primary care

was announced as well as the estab-lishment of a new health agency called

shared decision making and patientchoice.

[8] NHMRC (National Health and Medical

2003.

[10] Royal Australian College of General Practi-tioners. Chronic Condition Self Manage-ment Guidelines; 2003.

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rtbCancer Australia. Although none oftheir current research priorities expli-citly include SDM, cancer patients havebeen a very powerful advocacy groupin recent years and it is possible thatthey will influence the research prio-rities of this new initiative embracing

210($524,653), and McCaffery et al., arandomized controlled trial of a bowelcancer screening decision aid for adultswith low education and literacy($229,500), demonstrating a compara-tively low commitment to funding SDMresearch in Australia.

7. Future perspectives ofSDM in Australia

The legal system and consumer advo-cacy groups have influenced develop-ment of various policies for the sharingof information and decision-makingbetween doctors and patients. Theresult is an unsystematic approachacross Australia to the patients to beinginformed and involved in decision-making. Many doctors are still unawareof the minimum legal obligation toinform patients [34]. Consequently,there is a long way to go to ensurepatients are both informed andinvolved in decisions about their health.To date all efforts at advancing theissues of patient rights and informationhave been targeted towards the supplyside of health care, encouraging clin-icians to adopt best-practice models ininforming patients and shared decision-making, with mixed results. In thefuture consumer groups will need totarget the demand side by educatingconsumers as to the questions to asktheir clinicians to ensure that they getsufficient information to participate indecision-making and make decisionsthat will maximize their individualhealth outcome.In 2005, the Australian governmentestablished a new health policy initia-tive called Strengthening Cancer Care.Increased research funding for cancerZ.arztl. FoResearch Council). Communicating withpatients: advice for medical practitioners.Canberra: Commonwealth of Australia,NHMRC; 2004.

[9] National Breast Cancer Centre andNational Cancer Control Initiative. ClinicalPractice Guidelines for the PsychosocialCare of Adults with Cancer. Camperdown,NSW: National Breast Cancer Centre;Statement on conflict of interest

We hereby declare there is no conflictof interest according to the UniformRequirement for Manuscripts Submit-ted to Biomedical Journals.

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Zertifizierter PatientenratgeberUm

In psychischen Krisen sind Medikamentemanchmal unverzichtbar. Das Ratgeberbuch

Umgang mit Psychopharmaka

stellt alle Psy-chopharmaka auf dem deutschsprachigenMarkt vor, erklart die Funktionsweisen samtWirkung und Nebenwirkung und gibt Hinwei-se zum Reduzieren und Absetzen.Die Stiftung Gesundheit hat das Buch zertifi-ziert. Die Gutachter bewerten das Werk

als

einen sehr informativen, leicht verstandlichenund optimal aufgeteilten Ratgeber, welchereinen umfassenden Uberblick der medika-

Z.arztl. Fortbild. Qual.Gesundh.wes. 101 (20www.elsevier.de/zaefqTattersall MHN. Communicating prognosisin cancer care: a systematic review of theliterature. Ann Oncol 2005;16(7):100553.

ang mit Psychopharmaka

mentosen und nicht-medikamentosen Be-handlungsmoglichkeiten psychischer Erkran-kungen liefert.

Das Autorenteam mochte Patienten dazu er-mutigen, sich eine eigene Meinung zu bildensowie ihre Wunsche und Ziele in das Ges-prach mit dem Arzt einzubringen und mitihm gemeinsam zu

verhandeln

, welche Be-handlung der beste Weg ist.

Umgang mit Psychopharmaka

, Nils Geve,Margret Osterfeld, Barbara Diekmann, BA-LANCEratgeber, Psychiatrie Verlag, ISBN 978-

2052112006;6(1):96.

3-86739-002-6, fur 14,90 Euro im Buchhan-del erhaltlich.

Korrespondenzadresse:Stiftung GesundheitBehringstrae 28 a22765 HamburgTel. 040 / 80 90 87 - 0Fax 040 / 80 90 87 - 555E-Mail: sg@arztmail.dewww.stiftung-gesundheit.de

Literatur und Rezensionen

211standing community beliefs of Chinese- [39] Hagerty RG, Butow PN, Ellis PM, Dimitry S, abnormalities: a cluster randomised trial[ISRCTN22532458]. BMC Public Health

Shared decision-making in AustraliaLevel of patient participation in macro, meso and micro levelsPresent state of SDM implementation in the Australian Health Care SystemMechanisms and institutions which support SDM in practiceOutline placeholderImplementation of tools and interventions to increase patient participation

Barriers to SDM in AustraliaOutline placeholderSystem related barriersHealth professional barriersConsumer/patient related barriers

Influence of patient rights on SDM implementationPresent SDM-research and research fundingOutline placeholderResearchers and Research groupsResearch goals and prioritiesResearch funding

Future perspectives of SDM in AustraliaOutline placeholderStatement on conflict of interest

References

Zertifizierter Patientenratgeber Umgang mit Psychopharmaka