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Consumer & CarerParticipation Framework

October 2011

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ACKNOWLEDGEMENTS

The ACT Government, Health Directorate acknowledges the traditional custodians of the land we walk upon today, the Ngunnawal people and respect their continuing culture and the contribution they make to the life of this city and surrounding region.

The Health Directorate Consumer and Carer Participation Framework was developed with considerable input from a large range of consumers, carers, community members, community organisations, health services and Health Directorate staff.

Health Directorate would like to thank all of these people and in particular:

Consumers and carers who volunteered their time & expertise;

Participants in consultation workshops held late 2008 and early 2009 and facilitated by Health Care Consumers Association ACT;

Members of the steering group that had representatives from Health Care Consumers’ Association ACT, ACT Mental Health Consumer Network, Carers ACT, Federation of Ethnic Communities’ Council of Australia, Winnunga Nimmityjah Aboriginal Health Services ACT, and Health Directorate staff.

CONTACTS The plan was prepared by Health Directorate and can be downloaded from the Health Directorate website at: www.health.act.gov.au

ACCESSIBILITY The ACT Government is committed to making its information, services, events and venues accessible to as many people as possible.

If you have difficulty reading a standard printed document and would like to receive this publication in an alternative format – such as large print or audio – please telephone please telephone 13 2281 or email HealthACT@act.gov.au.

If English is not your first language and you require translating and interpreting services – please telephone 131 450.

If you are deaf or hearing impaired and require the TTY typewriter service – please telephone (02) 13 3677, then ask for 13 2281.

Speak and listen users—phone 1300 555 727 then ask for 13 2281.

Internet Relay Users—connect to the NRS, then ask for 13 2281.

© Australian Capital Territory, Canberra, September 2011

This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced by any process without written permission from Territory Records Office, ACT Government, Territory and Municipal Services Directorate, GPO Box 158, Canberra City ACT 2601.

Enquiries about this publication should be directed to ACT Government, Health Directorate, Communications and Marketing Unit, GPO Box 825 Canberra City ACT 2601 or email: HealthACT@act.gov.au

www.health.act.gov.au | www.act.gov.au

Enquiries: Canberra 13ACT1 or 132281

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CONTENTS

Health Directorate values and vision.....................................................................5

What is the purpose of this Framework?...............................................................6

Why increase consumers and carers participation and active involvement? .......6

What are the benefits of actively involving consumers and carers? .....................6

What is participation? ...........................................................................................7

Meaningful participation.........................................................................................8

What enables and facilitates greater participation? ..............................................9

What limits and prevents greater participation? ..................................................11

Deepening our understanding of participation and engagement.........................12

The ladder of participation – a continuum.................................................12

Examples of ACT initiatives that promote consumer participation............13

Elements of patient and family centred care ...........................................15

Consumer rights as a foundation for consumer and carer participation....16

Evaluating and reporting on consumer participation............................................19

Appendices:

1. Glossary....................................................................................................20

2. Acronyms..................................................................................................23

3. Useful ACT contacts..................................................................................24

4. Useful national contacts............................................................................27

5. Useful ACT policies and documents..........................................................29

6. Useful national policies and documents......................................................2

References............................................................................................................4

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The Health Directorate recognises that building an effective health care system requires genuine collaboration between

consumers, carers and Health Directorate staff.

Health Directorate is committed to providing opportunities for consumers and carers, those who are most affected by health

care services, to influence the development, delivery and review of services.

Increasing the participation of consumers and carers into health care is fundamental to building a strong partnership.

Health Directorate services will be able to provide higher quality care as a result of meaningful consumer and carer involvement in

policy development and planning of health services.

Community participation is integral to the

recognition of human rights and strengthening civil society. It promotes trust

and respect between the community and government by enabling stakeholders to have a say in decisions that affect their

lives. It enhances openness and accountability on the part of the

government.

ACT Government Community Engagement Manual 2005

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Consumer participation is bedded into many international and national conventions, charters and legislation such as:

Charter on the Rights of Children and Young People in Healthcare Services in Australia (2010)

Australian Safety and Quality Framework for Health Care (2010)

Australian Commission on Safety and Quality in HealthCare (ACSQHC) and National Safety and Quality Health Service Standards (2011)

Australian Charter of Healthcare Rights (2008)

United Nations Brisbane Declaration on Community Engagement (2008)

ACT Human Rights Act (2004)

World Health Organisation Declaration of Alma Ata (1978)

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Values:

Care: Go the extra distance in delivering services to our patients, clients and

consumers.

Be diligent, compassionate and conscientious in providing a safe and supportive environment for everyone.

Be sensitive in managing information and ensuring an individual’s privacy.

Be attentive to the needs of others when listening and responding to feedback from staff, clinicians and consumers.

Excellence: Be prepared for change and strive for continuous learning and quality

improvements.

Acknowledge and reward innovation in practice and outcomes.

Develop and contribute to an environment where every member of the team is the right person for the job, and is empowered to perform to the highest possible standard.

Collaboration: Actively communicate to achieve the best results by giving time, attention

and effort to others.

Respect and acknowledge everyone’s input, skills and experience by working together and contributing to solutions.

Share knowledge and resources willingly with your colleagues.

Integrity: Be open, honest and trustworthy in communicating with others, and

ensure correct information is provided in a timely way.

Be accountable, reflective and open to feedback.

Be true to yourself, your profession, consumers, colleagues and the government.

Vision is: Your Health, Our Priority

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What is the purpose of this Framework?

1 This Framework aims to assist consumers, carers and Health Directorate staff to work in genuine collaboration in order to:

increase consumer and carer participation in health care;

facilitate joint decision making at all levels; and

improve the development, delivery and evaluation of ACT’s public health services.

2 This document is an overarching framework and is not intended to be a practical implementation plan. Implementation plans and strategy documents will be developed to operationalise key directions of this framework.

Why increase consumers and carers participation and active involvement in health care?

3 Health Directorate believes that participation of consumers and carers in health care:

is a democratic and human right; improves health outcomes; improves the quality, responsiveness and safety of health services; and strengthens civil society.

What are the benefits of actively involving consumers and carers in health care?

4 There is significant evidence both internationally and nationally regarding the benefits of increasing consumers and carers participation in their own healthcare and in the broader healthcare system.

Active consumer participation creates multiple benefits for both consumers and carers themselves and for health services and staff.

5 The benefits for consumers and carers include: receiving services that are more responsive; improved quality and safety of services; increased trust and engagement with health care professionals; improved understanding of conditions, treatments and options; increased capacity to self-manage and adhere to treatments; increased confidence, competency and sense of self-determination; improved health literacy and help-seeking behaviour; increased social inclusion; and improved long-term health outcomes.

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DGD11-0946 The benefits for Health Directorate and the broader health system include:

improved safety and quality of health services provided; improved health outcomes for consumers; improved responsiveness based on meeting consumer needs and

community priorities; increased openness, trust and respect for consumers, carers and

community; improved efficiency and cost effectiveness in how health services are

provided; increased accountability to consumers and carers; increased consumer focus to drive quality improvement processes; inclusion of valuable insights from consumers and carers which may not

otherwise be apparent, or may be significantly different to those held by health professionals;

improved access to a diverse range of skills, experiences and knowledge; increased capacity to meet accreditation standards; improved job satisfaction, staff retention and morale; reduced conflicts, complaints, litigation; and absenteeism; and

increased social capital towards a more inclusive community.

What is participation? 7 The term participation is broadly defined as the involvement of individuals and

their significant others in decisions that affect their lives. Participation is about being part of the decision making process, with active involvement in developing additional options or actions, and not merely observing and commenting on these processes.

8 Participation in health care occurs when consumers, carers and community members are meaningfully involved in decision-making about health policy and planning, care and treatment, and the wellbeing of themselves and their community.

Patient and family centred care refers to a collaborative approach to care-giving and decision-making which is fundamental to facilitating quality consumer and carer participation and which is respectful of and responsive to individual patient preferences, needs and values.

9 Opportunities for consumer participation within the health system exist at many levels and at many points within the continuum of care and delivery of services.

These include but are not limited to participation at: the level of individual care where there are interactions between the

consumer, patient and/or carer and the healthcare providers; the service level where consumer and carer participation is focused on

contributing to service delivery guidelines and procedures; and the organisational level where the level of participation is focused on

broader strategic and policy development activity.

Meaningful participation

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10 Facilitating quality consumer participation is a complex and continual process that requires commitment and understanding from all parties - from consumers and carers, advocacy organisations, health professionals, managers and policy staff, through to senior executives.

The level of commitment and understanding that all parties bring will determine whether the participation process is meaningful and delivers the desired health outcomes.

Consumer participation must be supported at all levels in the workplace culture, policies, scheduling and allocation of resources.

11 Alternatively, if any or all of the parties lack commitment or understanding, the participation process is more likely to become tokenistic with the potential to diminish the quality of the consumer / professional relationship; contribute to poor health outcomes; or to further entrench health inequalities.

12 There is now a significant body of evidence and research available to help increase understanding of what enables and facilitates greater participation and also what prevents or is a barrier to quality participation.

Much of this evidence is drawn from the lived experiences of consumers, carers and health professionals, and provides valuable insight into ways to improve the capacity of consumer and carers to participate in the health care system, and ways to improve the capacity of the health system to respond to the needs of consumers.

13 In essence, the research highlights that to ensure quality participation in health care there needs to be:

organisational cultural change to support participation;

organisational commitment to build capacity amongst staff and the organisation to support participation;

attitudinal change and skill development of staff to support participation;

skill development and support of consumers and carers to facilitate participation;

organisational infrastructure in place to support participation, such as policies, committees, and reimbursements funds;

an organisational culture of continual quality improvement; and

organisational commitment to patient and family centred care.

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What enables and facilitates greater participation?

14 The following qualities are recognised as being fundamental to enabling and facilitating effective and meaningful consumer and carer participation. These qualities are also intrinsic to developing respectful relationships and partnerships.

15 Consumer / carers who embrace consumer-centred health care: are open to listen and learn from their experiences and in their interactions

with staff; are confident to ask questions, challenge, and express their opinions and

preferences in a constructive manner; work to build a mutually-beneficial partnership with staff that is built on

respect and trust; take responsibility for their own health care and self-management, where

possible; are informed and health literate; and share their own and other consumer experiences as part of improving the

quality of health services.

16 Health professionals who embrace consumer-centred health care and facilitate consumer and carer participation:

are open to seek and listen to the views of consumers and carers;

are committed to participatory decision-making processes;

work to build a mutually-beneficial partnership with consumers and carers that is built on respect, trust and hope;

share knowledge and information freely with consumers; are always respectful in their interactions with consumers and carers; see the whole person and not just symptoms and diseases; take a holistic approach rather than just disease or injury management; are aware of or open to learn about cultural differences, values or

preferences; recognise there are a diverse range of consumers, some who may be harder

to reach, or may require additional support; acknowledge that partnership with consumers and carers provides the

opportunity for two-way learning; view carers and consumers as experts on their own body, best-interests and

needs; recognise that different approaches may be necessary based on the needs

of different groups eg: children, people who do not have English as their first language etc;

reflect on their practice in collaboration with consumers; take time to deepen their dialogue with consumers and carers and enhance

their understanding of their needs and preferences; and allow time to explain, provide options and share decision-making.

What enables and facilitates greater participation? - continued -

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17 Advocacy, consumer and self-help organisations that facilitate quality consumer and carer participation:

provide training, support and resources for consumers and carers to participate at individual and system levels;

work to build a mutually-beneficial partnership between consumers and carers and healthcare staff that is built on respect and trust;

work in a cooperative rather than adversarial manner;

work to build health literacy in the community;

build capacity for consumers and carers to be advocates and representatives;

create transparent mechanisms and infrastructure to support consumer participation eg. networks, policies, committees, feedback and complaint processes;

address the barriers to genuine participation through affirmative action processes, including positive discrimination; and

promote a culture of continual quality improvement.

18 A health care service that facilitates greater consumer and carer participation: builds and promotes a culture that places value on patient-centred care and

consumer participation; creates mechanisms and infrastructure to support consumer participation eg.

policies, committees, feedback and complaint processes; provides culturally sensitive and competent services; provides training, support and resources for staff and consumers to facilitate

participation; reviews organisational practice and processes in meaningful collaboration

with consumers; reimburses consumers and carers for their formal advocacy and

representative work on committees and forums; addresses the barriers to genuine participation through affirmative action; promotes cooperative rather than adversarial relationships;

is culturally sensitive and provides cultural awareness training for health professionals;

maintains transparency and promotes open disclosure; facilitates a shift in the power relationship between staff, consumers, and

carers; analyses and compares service usage data against demographic data to

review and address accessibility of services; and commits to change management at all levels of health care delivery and

planning.

What limits and prevents greater participation?

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19 The following characteristics are recognised as limiting or preventing effective and meaningful consumer and carer participation.

20 Consumer / carers: are passive or powerless in managing their health; are poorly or ill-informed about their health, treatment and treatment options; label and judge health care professionals; lack confidence to ask questions, challenge, and express their opinions and

preferences; and are ignored, intimidated or coerced by health care professionals.

21 Health professionals who limit or prevent consumer and carer participation: use language that is confusing; eg. acronyms, jargon, and incomprehensible

medical terms; do not take time to deepen their dialogue with consumers and carers; are authoritarian, paternalistic or dismissive towards consumers and carers; label and judge consumers and carers; are ignorant of or disregard the needs and preferences of consumers and

carers; are arrogant and assume they know what is best for the consumer and

carers; deny clients and carers a voice and choice in their healthcare; are culturally insensitive or ignorant; are reluctant to depart from traditional practices; and are inflexible and take a one-size-fits-all approach.

22 Advocacy, consumer and self-help organisations who limit or prevent consumer and carer participation: take an adversarial approach to their work; label and judge staff and the healthcare system; and lack inclusive practices or strong ties to the community.

23 A health care service that limits or prevents consumer and carer participation: allocates resources and provides services based on organisational and staff

requirements rather than on the needs of consumers and carers; fails to address the demands on staff time to develop quality interactions with

consumers and carers; and places greater value on technological advances in health care than on quality

of relationships and interactions between staff and consumers and carers.

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Deepening our understanding of participation and engagement

24 There is an extensive amount of research, theory and best practice knowledge to draw upon to assist with deepening our understanding of how to improve the participation and engagement of patients, consumers and their families.

A snapshot of these resources is captured in the appendices and in the reference list at the back of this document.

25 In a nutshell, improving consumer participation and engagement requires an understanding of and commitment to:

a) the ladder (and continuum) of participation;

b) the principles and elements of patient and family centred care; and

c) upholding and promoting health care rights.

26 Following is a brief explanation of these three concepts, highlighting the interconnectedness of these concepts with consumer participation.

a) The ladder of participation – a continuum

27 In 1969, Sherry Arnstein in her groundbreaking work A Ladder of Citizen Participation discusses eight types of participation, which range in a continuum from non-participation and tokenism, through to citizen power depending on the degree of power and decision making that has been redistributed.

She describes these levels of participation in the continuum as:

Non-participation: manipulation therapy; Tokenism: informing consultation placation; Citizen power: partnership delegated power citizen control.

28 Over the years, the Ladder of Citizen Participation has been refined and adapted as governments and communities have worked to apply the model of participation to their particular context.

A practical adaptation, as referenced in the Consumer Engagement Framework for Health in Queensland, refers to five elements of consumer engagement that reflect increasing degrees of decision-making and power for consumers, carers and their families.

Information Consultation Involvement Collaboration Empowerment

29 The Queensland Framework describes these following five elements of consumer engagement:

Information exchange: refers to a process of providing timely, fit-for-purpose information, which conveys facts, feelings and perspectives between consumers and/or their representatives and health practitioners and agencies. Information exchange is an important first step in consumer participation, however alone it provides only a low level of consumer and carer involvement and influence;

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a) The ladder of participation - continued -

30 Consultation: refers to processes of gathering information, discussing issues and gaining consumer and community input. While consultation involves consumer participation, the capacity for consumers to influence change and participate in decision making is variable, as it is dependent on the health practitioner’s and agency’s commitment to change, and the cultural sensitivity and competency of staff.

Involvement: refers to processes that are shared between the consumer, health practitioner and agency to set agendas, plan, deliver and evaluate services. At this level of participation, consumers have some agenda-setting role and some ability to influence decisions and offer differing options.

Collaboration: refers to processes of joint decision-making, where innovative and preferred solutions are developed together between consumers, health practitioners and agencies. Consumers have a higher level of involvement and influence when they are able to work collaboratively and in partnership.

Empowerment: refers to consumer-led priority setting, decision making and in some cases implementation of consumer preferred health care. Consumers are actively involved and have control.

31 What this Ladder of Participation looks like in practice in the ACT is captured in the following table.

Additional details about the examples of Health Directorate initiatives can be found in the appendices of this document.

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Examples of ACT initiatives that promote consumer participation

Points of engagementFive elements in the continuum of engagement

Information Consultation Involvement Collaboration Empowerment

Individual

Information (eg. brochures) is provided that is timely

and fit-for-purpose

Patient journeys are recorded and shared with

staff to facilitate improvement in service

delivery

Consent to treatment policy & procedure ensure consumers participate and provide informed consent

Staff take a patient & family centred care approach by being collaborative in care giving & decision-making

Respecting Patient Choices program allows patients to document decisions about

their future health care

Health information and advice is provided from

HealthDirect call centre and online portal

ACT Healthcare Consumer Satisfaction

Survey regularly conducted and reported

Family initiated medical emergency team calls are

adopted to improve the recognition & response to

clinical deterioration

PatCH Consumer Network assists with developing Patient Held Records (PHR) that contain a

parent-driven summary of medical records

Opening of West Belconnen Health Cooperative provides consumer

controlled health services

Service delivery level

Health promotion campaign targeting

preventative risk factors

Consumer needs analysis conducted regularly

Parents with children in the Neonatal Intensive Care

Unit can remotely view their baby via a secure NICUCAM website

Joint projects arise from the Health & HCCA Liaison

CommitteeFunding provided to Mental Health Consumers Network

Mental health consumers employed as consumer advocates & consultants

Local health services directory available

Children are consulted in the development of the new

Women and Children’s Hospital

A User Group meets regularly to advise on the

redevelopment of the Neonatal Department

Carers consultation forum held to develop a charter of

carers rights Consumers contribute the development of Maternity Shared Care Guidelines

Consumers contribute to implementing the

Improving Women’s Access to Health Care Services

and Information plan

Joint Recovery Planning Policy supports active partnerships between consumers and Mental

Health ACT staff

Territory wide level

Australian Charter of Health Care Rights available

throughout health services

Consumers are consulted in the development of Models of Care to define the vision,

aims, and principles underpinning service

delivery across the ACT

Consumers and peak agencies participate in annual ACT Budget

consultation

Consumer representation & participation in Health

Directorate Management Council and Clinical Senate

Winnunga Nimmityjah Aboriginal Health services

funded as an aboriginal community controlled health

organisation

Health Directorate website and annual reports advise

on new initiatives

ACT Listening and Learning Standards detail quality processes for managing

consumer initiated feedback

Consumers involved in accreditation processes in line with Australian Council on Healthcare Standards

Consumers participate in steering committee to implement Australian

Charter of Health Care Rights

Expansion of jointly-owned & democratically-controlled health care co-operatives

across ACT

Note: Additional details about Health Directorate initiatives can be found in the appendices of this document.

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b) Elements of patient and family centred care

32 Patient and family-centred care acknowledges the important role of patients and their nominated family within the health care team, and the importance of delivering health care in a manner that works best for patients and their families.

In a patient-centred approach to health care, healthcare providers partner with patients and their family members to identify and satisfy the full range of patient needs and preferences.

33 The core concepts of patient and family-centred care as defined by the US Institute of Family-Centred Care (IFCC) are: Dignity and respect: Health care practitioners listen to and honour patient and

family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care;

Information sharing: Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful;

Participation: Patients and families are encouraged and supported in participating in care and decision making at the level they choose; and

Collaboration. Patients, families, health care practitioners, and hospital leaders collaborate in policy and program development, implementation and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.

34 Similarly, The Picker Institute has defined seven primary dimensions of patient-centred care as:

Respect for patients’ values, preferences and expressed needs; Coordination and integration of care; Information, communication and education; Physical comfort; Emotional support and alleviation of fear and anxiety; Involvement of family and friends; and Transition and continuity.

Picker Institute’s Dimensions of Patient-centred care, from Health Directorate Australian Charter of Health Care Rights e-learning package

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c) Upholding and promoting consumer health care rights as a foundation for consumer participation

35 Respecting consumer and carers rights is fundamental to ensuring their participation in their health care.

Health Directorate is committed to upholding and implementing the Australian Charter of Health Care Rights, the Charter on the Rights of Children and Young People in Healthcare Services in Australia, and the ACT Human Rights Act 2004.

36 Meaningful participation is most likely to be achieved when Health Directorate staff take a patient centred care approach and work together with consumers, carers and community members in a mutually respectful and open way.

Health Directorate’s values of Care; Excellence; Collaboration; and Integrity provide the overarching context for consumer rights and participation and guides the principles and features of good practice.

The quotes below have been taken from actual patient journeys, and are generously offered by patients to assist in improving our health services. These quotes provide valuable insights that illustrate how a situation may have been more positive had a consumer participatory approach been taken.

Australian Health Care Rights

Consumers offer insights into opportunities for improvement in healthcare

Consumers offer insights into meaningful & respectful participation and health care

AccessI can access services to address my healthcare needs

Ruth’s story Parents with children in the NICU who visit 3 -5 times a day should be given a parking permit and be able to park close to the hospital. I once had a phone call from a nurse telling me that my baby was hungry. I was driving around trying to get a car park when I should have been up feeding her.

Kate’s storyThe continuity of care provided by our midwife was really valuable in that respect. When I arrived at the Birth Centre she met us at the door. She was right there, prepared, she knew what we wanted.

Safety

I receive safe and high quality health services, provided with professional care, skill and competence

Katrina’s storyThey didn’t explain my medications. When I was up on the ward the pharmacist came in and asked about what I was on. They had prescribed something and there was no explanation and there were no tests or word on why I was given it. I didn’t like that at all.

Jess’s story It is hard for me to think of any negatives. The divide between upstairs and the birth centre is a little political. Some more positives: Having the same midwife both times. The classes were fantastic. The interactions with family – our midwife was fantastic with Lara. We had a doll to give Lara after the birth of the baby. She has called the doll after our midwife. I am interested in the name “patient journey” I didn’t feel like a patient. I didn’t feel like it was a medical thing even though the ultrasound was a medical test. My kids were not medical.

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Australian Health Care Rights

Consumers offer insights into opportunities for improvement in healthcare

Consumers offer insights into meaningful & respectful participation and health care

Respect

The care provided shows respect to me and my culture, beliefs, values and personal characteristics.

Roy’s story At Canberra Hospital it’s hard to tell what they are, they all wear all sorts of different clothing. Five people came in to ask the same questions. Pink slip or green slip – I can’t remember. Ten bits of paper round the hospital with the same thing on them. You should be able to get the information centralised. The nurses said doctors pick up notes and then leave them someplace.

Leigh’s storyOn Sunday night Leigh deteriorated, and there were many staff that came to see me and give me information on many different things. When Leigh was ‘bad’, TCH doctors and nurses were so caring and helpful. I only waited in the waiting room for a short period and I was always informed by staff, even staff who weren’t looking after Leigh. They would offer me their best wishes and tell me when I was able to see him. I thought the effort made by all the staff and the doctors was extraordinary.

Communication

I receive open, timely and appropriate communication about my health care in a way I can understand

Angela’s storyWe are regularly required to re-tell Angela’s ‘story’. Each time Angela is admitted to hospital (most often through the ED) we have a stream of doctors, from interns through to specialists, asking us to repeat Angela’s medical history. We think “don’t you guys talk to each other?” and wonder why we inform interns of Angela’s history when we are subsequently passed onto various other doctors, whom we also need to inform from scratch. This gets tedious and leads to feelings of frustration at times when we are already stressed.

Graham’s story Communication is the biggest problem. Doctors should not think that they are above anybody else. I know they’re busy and all that type of stuff. I had to sort of take Dr down a peg or two. You know, I’m a simple man, but he came in and said “Now, listen,” basically, “I’ve had to make a special trip to come all the way over here…”, “Bring everybody here.” And “I’m busy, I can’t stay for very long.”

Gail’s story PaTCH have introduced the disc (memory stick) to hold the background information (patient history) on. It is such a good idea.

Leigh’s storyLeigh provided a copy of an informational booklet developed by the Alfred ICU for patients and their families. The book showed clear pictures of equipment and/or procedures with easily understood explanatory information. Leigh suggested that the Alfred was aiming to have this booklet disseminated nationally.

Participation

I may join in making decisions and choices about my care and about health service planning.

Brian’s story They don’t tell you your progress very often. Sometimes you have been in there for a month before anyone tells you anything. They have this meeting once a week where you know that they are talking about you but you are not invited to attend. The first you hear about it is when the consultant and his entourage comes to see you the next week and he says, ‘hello Brian, how are you feeling? Now, we spoke about you last week didn’t we? Sister, what did we say about Brian?’ The nurse with the book then flicks through it until the appropriate entry is located and reads out what was discussed. There is no plan as far as I can tell. I am sure that they have a plan but it just isn’t shared with us.

Ingrid’s story Just being allowed to assist with his care, change his nappies, being able to hold his hand, meant the world. I could not state enough, the nursing staff could not be more helpful, the nursing staff were exceptional.

Nerrida’s storyThey work hard in the gym but I say to them “you can’t expect him to do what he couldn’t do before”. I know what he could and couldn’t do.

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Australian Health Care Rights

Consumers offer insights into opportunities for improvement in healthcare

Consumers offer insights into meaningful & respectful participation and health care

Privacy

My personal privacy is maintained and proper handling of my personal health and other information is assured

Amanda’ story It is difficult to maintain confidentiality with the [staff] desk sitting out in the middle of the unit. There is so little room. Yesterday I was breast feeding and had to be squashed in so the [next] cot could be turned for the father to see his baby.

Kylie’s storyThere was very little engagement with staff in Kylie’s room at any time. She was in the room on her own most of the time. She was in the ward for the first hour, then in a 6 bed room with older people for the night and then a single room near the nurses’ station. From the end of Kylie’s bed you could see the nurses’ station and hear everything being said.

Annette’s’ story I really like going to Gungahlin Child and Family Centre, they have glass windows so you can see the boys playing and they can see us, but I am still able to talk to the [maternal child health] nurse in private.

Leigh’s storyThe TCH waiting room is the best, with its fridge, coffee and tea making, toys for the kids and comfortable lounge chairs. The waiting area needs to be child friendly, safe and secure. Little cluster waiting areas would be better because then you are able to sit comfortably and not affected by others

Comment

I can comment on or complain about my care and have my concerns dealt with properly and promptly.

Peter’s storyI was not happy with the care that was provided to my mother, but I just didn’t know who I should speak to.

Frank’s storyI was impressed by the detailed response that I received from the hospital following a complaint I made. I felt that I had been taken seriously and listened to.

Michael’s storyI had completed a feedback form and popped it in the blue box on the wall thinking that I would never hear anything back. I was amazed when I not only got a response; it had actually addressed my concerns.

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Evaluating and reporting on consumer participation

37 This framework is an overarching document that aims to assist consumers, carers and Health Directorate staff work in genuine collaboration in order to increase consumer and carer participation in health care.

This framework is not a practical implementation plan. Implementation plans and strategy documents have and will be developed to operationalise key directions of this framework.

This framework recognises that initiatives that promote strengthened consumer and carer participation practices are complementary to current safety, quality and continuous improvement activities.

38 Health Directorate already has in place an extensive range of established practices and initiatives that demonstrate its ongoing commitment to consumer and carer participation. Examples of these include:

Listening and Learning: Consumer Feedback Policy and Standards;

Implementation of the Australian Charter of Healthcare Rights and Charter on the Rights of Children and Young People in Healthcare Services in Australia;

Consumer, Carer and Community Representative Program and Reimbursement Policy;

Relationships with consumer advocacy agencies through service funding agreements; and

Respecting Patient’s Choices. Details of these and other engagement initiatives can be found in the appendices.

39 Health Directorate reports its performance relevant to these practices through the following mechanisms:

Annual Reporting; Implementing and reporting on specific frameworks and policies such as the

Consumer Feedback Management Policy, the Mental Health Consumer and Carer Framework; and

Assessment and accreditation against the National Safety and Quality Health Service Standards

40 The success and impact of this framework will be evaluated and reported through the above established accountability measures.

Further to this, a three yearly review process will be conducted in conjunction with consumers and carers to ensure that the intent of the framework is being achieved as part of the Directorate’s continuous improvement environment.

Appendix 1Glossary of terms & definitions

Page 19 of 35

DGD11-094This list of terms has been designed to assist consumers, carers and community members as well as health professionals to navigate the complex language of the health sector.

Advocate A person who assists a consumer or carer to have their views and ideas heard and understood. Advocates may work for community organisations that have been formed by groups of consumers and/or carers around a particular health issue, illness, cultural, social or ability need.

Best interests The assessment of what is most beneficial for the consumer and carer, including the consideration of the risks involved and the person’s own values.

Carers Family and friends who provide care or assistance to another person who is unwell, frail, has a disability, a chronic medical condition or a mental illness. The care is provided without payment apart from a pension benefit or allowance. The needs and issues for carers may be different than those for patients and consumers.

Civil society Civil society refers to the relationships and associations that make up our life at grass-roots levels of society, in families, neighbourhoods and voluntary associations, independent of both government and the commercial world.

Community A geographical grouping or a community with shared interests. Sometimes the general community rather than a group of health care consumers or carers may be the constituency for a particular health issue, for example air pollution in a local government area.

Consumer People who use or are potential users of health services.

The Health Directorate Consumer Feedback Standards define consumer to mean: people who directly access a health service or their nominated

representative or representative with legal authority; their carer, family member or advocate; groups of consumers or consumer organisations; or members of the community.

Consumer / carer participation

Processes of creating dynamic relationships that enable consumer / carer input into decision-making about the health care of the consumer, where appropriate, and in allowing for input into health service planning, policy development, priority setting and addressing quality issues in the delivery of health services. Consumers / carers may participate as individuals, groups, organisations of consumer / carers, as representatives or as communities.

Consumer engagement

Consumer engagement is more than participation, conveyingthe idea that a person or group of people are occupied, focused,and committed to an issue and ready to take ownership ofthe outcomes. It is a dynamic process that can never be fully controlled.

Page 20 of 35

DGD11-094

Consumer experience

Consumers (patients) experience best practice care suited to their needs and circumstances informed by high quality information and seamless and safe care when transferring between settings.

Consumer feedback

Refers to information provided by consumers - in their own words and in their own time - about their experiences of any aspect of health care, treatment or services.Feedback includes both positive and negative information in the form of compliments, complaints or comments for improvements to the quality and safety of health care.’

Consumer / carer representatives

People nominated by and accountable to a group of consumers or carers to bring a consumer or carer perspective to matters under deliberation. Representatives are trained in advocacy and/or representation, and are selected and endorsed by an advocacy or community agency to represent the views and interests of health consumers.

Cultural responsiveness

The capacity to respond to the health care issues of diverse communities.

Cultural awareness training

Training for non-Indigenous Australians to increase their understanding of Aboriginal and Torres Strait Islander cultures and to develop their skills to become culturally competent at both a personal and professional level.

Decision-making Any choice to receive treatment, refuse treatment, or to withdraw consent to treatment.

Health care Providing services that help individuals achieve an optimal state of health and wellbeing in any setting or stage in the human life cycle.

Health Impact Statement

HIS is a process that involves assessing the likely risks and benefits to health for a specific population, eg. Aboriginal and Torres Strait Islander communities, which may result from a particular development or initiative.

Health literacy The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.

Patient centred care

Providing care that is respectful of and responsive to individual patient preferences, needs and values and ensuring patient values guide all clinical decisions.

Patient journey & patient experience

Patient journey describes the touch points or areas of care encountered by a patient.

Patient experience is their interpretation of their journey.

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DGD11-094

Healthcare quality

Good quality care is defined as safe, effective, patient centred, timely, efficient and equitable care and treatment.Five dimensions of quality in health care that supports the consumer as the strategic focus include: Safety: Potential risks to consumers are avoided and inadvertent harm

minimised in the care delivery process. Effectiveness: Interventions that are best practice and produce the

desired outcome for the consumers are routinely used. Appropriateness: Care is tailored to meet individual needs, is timely

and performed according to agreed evidence based considerations. Accessibility: Services are based on the assessment of consumer

needs and is re-configured as required to meet changing needs. Efficiency: Resources are utilised in a way that ensures maximum

benefit for consumers.

Meeting An activity where a person is formally engaged by Health Directorate to provide advice in their capacity as a consumer, carer and community representative. Examples include, but are not limited to, committee meetings, selection panels, and meetings convened by organisations contracted by ACT Health.

Open disclosure The open discussion of incidents that resulted in harm to a patient while receiving heath care.

Patient centred care

Patient-centred health care refers to healthcare that is respectful of, and responsive to the preferences, needs and values of patients and consumers.

Participation Participation refers to a process when consumers, carers and community members are meaningfully involved in decision making about care and treatment, health policy and planning, and the wellbeing of themselves and the community.

Primary health Health care that is provided by a health care professional in the first contact of a patient with the health care system e.g. General Practitioners.

Privacy Protection of body, space, experience and identifying information.

Safety A state in which risk has been reduced to an acceptable level.

Social capital Social capital refers to the collective value of social networks which bond similar people and provide a bridge between diverse people. Social capital also involves norms of reciprocity where the inclination to do things for each other arises from participating in and belonging to these social networks.

Page 22 of 35

DGD11-094Appendix 2

Acronyms

ACHS Australian Council of Health Care Standards

ACSQHC Australian Commission on Safety and Quality in Health Care

ADACAS ACT Disability, Aged & Carer Advocacy Service AWHN Australian Women's Health Network

CALD Culturally and linguistically diverse CFET Consumer Feedback and Engagement Team

CHF Consumers Health Forum of Australia

CYCLOPS Connecting Young Carers to Life Opportunities and Personalised Supports

FECCA Federation of Ethnic Communities’ Council of Australia

FOI Freedom of Information

HCCA Health Care Consumers Association of the ACT

HIC Health Issues Centre

IEB ACT Indigenous Elected Body

MARSS Migrant and Refugee Settlement Services of the ACT

MHCA Mental Health Council of Australia

MHCN Mental Health Consumer’s Network (ACT)

NACCHO National Aboriginal Community Controlled Health Organisation

NSQHSS National Safety and Quality Health Service Standards

PaTCH Paediatrics at TCH (The Canberra Hospital)

PHIO Private Health Insurance Ombudsman

PWD People with Disabilities ACT

QEII Queen Elizabeth II

SHOUT Self Help Organisations United Together

TCH The Canberra Hospital

TTY Telephone typewriter

WCHM Women's Centre for Health Matters

For more acronyms and terms see Australian Department of Health and Ageingwww.health.gov.au/internet/main/publishing.nsf/Content/Glossary

Page 23 of 35

DGD11-094Appendix 3

Useful ACT contacts Aboriginal and Torres Strait

Islander Health PortalThe portal provides information on Aboriginal and Torres Strait Islander health issues, health organisations, policies and research including cultural events of significance.

Web: http://health.act.gov.au/health-services/aboriginal-torres-strait-islander

ACT Indigenous Elected Body

The IEB aims to improve the lives of Indigenous Canberrans by providing a strong democratically elected voice, and by providing direct advice to the ACT Government.

Phone: 6205 2551Email: oatsia@act.gov.auWeb:www.dhcs.act.gov.au/matsia/atsia/asti_elected_body

ACT Community Engagement Online

An ACT Government portal of information and resources relating to consumer engagement and engagement processes.

Phone: 6205 8618Email:communicationsandengagement@act.gov.auWeb:mwww.communityengagement.act.gov.au/index

ACT Disability, Aged & Carer Advocacy Service

ADACAS provides individual advocacy for people with disabilities, the elderly and their carers.

Phone: TTY 02 6242 5065Email: adacas@adacas.org.auWeb: www.adacas.org.au

A Gender Agenda AGA provides information, resources, support and advocacy for transgender, intersex, gender queer and other gender variant people and their supporters.

Email: advocacy@genderrights.org.au

ACT Health Care Consumers’ Association

HCCA is an independent, community based organisation that advocates and represents the consumers’ voice in health policy, planning, research, and service delivery.

Phone: 6230 7800Email: hcca@hcca.org.au Web: www.hcca.org.au

Consumer Feedback and Engagement TeamHealth Directorate

CFET coordinates responses to feedback received from consumers and their families.

Phone: 62077627 Email: HealthFeedback@act.gov.au Web: www.health.act.gov.au

ACT Mental Health Consumer Network

MHCN is run by consumers for consumers to bring about a higher standard of health care in the mental health sector by representing, lobbying & through active involvement in new developments in the mental health sector.

Phone: 6230 5796Email: actmhcn@actmhcn.org.au Web: www.actmhcn.org.au

Page 24 of 35

DGD11-094Useful ACT contacts - continued -

ACT Medicare Local The ACT Medicare Local, formerly the A

CT Division of General Practice has responsibility for the primary health care needs of the local ACT community, and aims to improve services for the ACT community.

Phone: 6287 8099 Email: reception@actml.com.au Web: www.actml.com.au

ACT Health Services Commissioner

The Health Services Commissioner investigates complaints, promotes improvements; and advocates for the rights of consumers of health services.

ACT Human Rights Commission

Phone: 6205 2222 Email: humanrights@act.gov.auWeb: www.hrc.act.gov.au

Canberra Alliance for Harm Minimisation and Advocacy

CAHMA represents the interests of past or current illicit/injecting drug users, their families and friends through advocacy.

Phone: 6279 1670Fax: 6279 1610Email: info@cahma.org.au Web: www.aivl.org.au

Carers ACT Carers ACT is the recognised and expert voice with and for carers, as well as being the major provider of carer services and supports in the ACT. 

Phone: 6296 9900 Web: www.carersact.asn.au

Charter of Healthcare Rights Implementation

Group

The implementation group provides direction and support to Health Directorate in relation to the Australian Charter of Healthcare Rights.

Phone: 6244 2447

Council on the Ageing ACT COTA is the peak agency that works to protect and promote the well-being, rights and interests of all older people in the ACT and their carers.

Phone: 6282 3777 Fax: 6285 3422 Email: contact@cota-act.org.au   Web: www.cota-act.org.au

CYCLOPS ACTConnecting Young Carers to Life Opportunities and

Personalised Supports

CYCLOPS is a service for young carers aged 11 to 18 years who care for a family member with a chronic illness, disability or mental illness and their families. They provide case management, personal support, support groups, recreation, education, training, and advocacy to young carers.

Phone: 6232 2432Email: cyclops@anglicarecg.org.auWeb: www.cyclopsact.org

Patch Family Advisory Network

The PatCH Consumer Network is dedicated to supporting and improving the paediatric services delivered at Canberra Hospital and at services throughout the ACT and surrounding regions.

Phone: 6244 3740Email: PatCHParents@act.gov.auWeb: www.patchnetwork.org

People with Disabilities ACT

PWD ACT is a peak consumer body representing people with disabilities who live in the ACT.

Phone: 6286 4223Email: pwdact@shout.org.au Web: www.pwdact.org.au

Public Advocate ACT The Public Advocate ACT has a statutory role to promote and protect the best interests of those people who are unable to do so themselves, including consumers with a

Phone: 6207 0707Email: pa@act.gov.au Web: www.publicadvocate.act.gov.au

Page 25 of 35

DGD11-094mental illness or mental dysfunction.

Useful ACT contacts - continued -

Migrant and Refugee Settlement Services

of the ACT

MARSS aims to be a leader in the provision of settlement and related services for migrants and refugees in the ACT and region.

Phone: 6248 8577Email: marss@marss.org.auWeb: www.marss.org.au

Respecting Patient Choices Coordinator

Health Directorate

The coordinator assists with advance care planning to enable individuals to discuss and document decisions about future health care for a time when they are unable to participate in their medical decisions.

Phone: 6244 3344

Web: www.health.act.gov.au/c/health?a=da&did=10101609&pid=1284680112

Self Help Organisations United Together

SHOUT provides a multi-service resource centre for self-help and support groups, and for individuals & families seeking to establish new groups to meet their needs.

Phone: 6290 1984Web: www.shout.org.au

Women's Centre for Health Matters

WCHM works to improve the health and wellbeing of all women in the ACT and region.

Phone: 6290 2166Email: admin@wchm.org.auWeb: www.wchm.org.au

Women With Disabilities ACT

WWDACT is a peer support and systemic advocacy group of women with disabilities who live in the ACT and region.

Phone: 6291 6842Email: wwdact@gmail.com Web: wwdact09.blogspot.com

Winnunga Nimmityjah Aboriginal Health

Services ACT

Winnunga provides a holistic model of health care of medical and other programs that promote good health and healthy lifestyles.

Phone: 6284 6222Web: www.winnunga.org.au

Youth Coalition of the ACT

The Youth Coalition is the peak youth affairs body in the Australian Capital Territory and is responsible for representing the interests of people aged between 12 and 25 years.

Phone: 6247 3540Email: info@youthcoalition.net Web: www.youthcoalition.net

Page 26 of 35

DGD11-094Appendix 4

Useful national contacts Australian Council of

Health Care Standards ACHS is an independent not for profit organisation dedicated to improving quality in health care. It represents governments, consumers and peak health bodies throughout Australia.

Phone: 02 9281 9955Email: achs@achs.org.au Web: www.achs.org.au/Home

Australian Women's Health Network

AWHN is a not-for-profit network and peak organisation for women's health in Australia to maintain and advance a national voice on women's health through advocacy and information sharing.

Phone: 03 9662 3755Email: awhn@whv.org.auWeb: www.awhn.org.au

Australian Commission on Safety and Quality

in Health Care

The Commission aims to lead and coordinate improvements in safety and quality in health care in Australia by identifying issues and policy directions, and engage with patients, consumers and their carers.

Phone: 02 9126 3600Email: mail@safetyandquality.gov.auWeb: www.health.gov.au/internet/safety/publishing.nsf/Content/home

Carers Australia Carers Australia and the network of carers associations in each state and territory's aim to improve the lives of carers through counselling, advice, advocacy, education and training. CA also promotes the recognition of carers to governments, businesses and the wider public.

Phone: 6122 9900 1800 242 636Email: caa@carersaustralia.com.au Web: www.carersaustralia.com.au

Carers Advisory and Counselling Line

The Carers Advisory and Counselling Line provides information, referral, advocacy, problem solving, developing options, counselling appointments and workshops.

Phone: 1800 242 636 Email: Web: www.carersaustralia.com.au

Consumers Health Forum of Australia Inc

CHF is the national voice for health consumers. As an independent member-based non-government organisation, CHF helps shape Australia's health system by representing and involving consumers in health policy and program development.

Phone: 6273 5444Email: info@chf.org.auWeb: www.chf.org.au

HealthInsite HealthInsite is a health information service that aims to improve the health of Australians by providing easy access to quality information about human health.

Phone: 1800 022 222Email: healthinsite.feedback@nhccn.com.auWeb: www.healthinsite.gov.au

Health Issues Centre HIC is an independent, not-for-profit organisation that promotes equity & consumer perspectives in the Australian health system.

Phone: 03 9479 5827Email: info@healthissuescentre.org.au Web: www.healthissuescentre.org.au

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DGD11-094Useful national contacts - continued -

IAP2 Community Participation

Spectrum

International Association for Public Participation (IAP2) Australasia promotes the values and leading practices associated with involving the public in decisions that impact their lives.

Web: www.iap2.org.au

Private Health Insurance Ombudsman

PHIO provides an independent service to help consumers with health insurance problems and enquiries. They can deal with complaints from health fund members, health funds, private hospitals or medical practitioners.

Phone: 1800 640 695Email: info@phio.org.auWeb: www.phio.org.au

Federation of Ethnic Communities’ Council of

Australia

FECCA is the peak, national body representing Australians from culturally and linguistically diverse backgrounds and its role is to advocate, lobby and promote issues on behalf of its constituency to government, business and the broader community.

Phone: 6282 5755Email: admin@fecca.org.au Web: www.fecca.org.au

Mental Health Council of Australia

MHCA is the peak, national non-government organisation that represents and promotes the interests of the Australian mental health sector and aims to achieving better mental health for all Australians.

Phone: 6285 3100Email: admin@mhca.org.au Web: www.mhca.org.au

National Aboriginal Community Controlled

Health Organisation

NACCHO is the national peak Aboriginal health body representing Aboriginal Community Controlled Health Services throughout Australia.

Phone: 6248 0644Email: elaine@naccho.org.auWeb: www.naccho.org.au

Page 28 of 35

DGD11-094Appendix 5

Useful ACT policies and documents on consumer / carer participation Accessibility

Public Consultations and Forums Access

Guidelines

The guidelines aim to assist events organisers to ensure that the events are as accessible and inclusive as possible for people who are deaf or hard of hearing, have a sight

impairment, or have mobility issues.

www.communityengagement.act.gov.au/related_act_government_plans_and_strategies

Advocacy and representationConsumer, Carer and

Community Representative Reimbursement Policy

Health Directorate

The policy aims to guide decisions for Health Directorate staff regarding reimbursement for consumers, carers and representatives of community organisations participating in Health Directorate activities.

www.health.act.gov.au/c/health?a=&did=11057972

Charter of rights and codes of conduct ACT Carers Charter

Discussion paper and proposed charter

The discussion paper discusses a proposed ACT Carers Charter that would provide recognition for carers and renew existing commitments to support carers in our community.

www.carersact.asn.au/wp-content/uploads/2010/10/ACT-Carers-Charter-Discussion-Paper1.pdf

ACT Charter of Rights for People who experience

Mental Health Issues

This charter has been designed to promote the rights of people who experience mental illness or mental health problems in the ACT and help people know what they can expect from services and the people who provide care for them.

http://health.act.gov.au/health-services/mental-health-act/charter-of-rights

Code of ConductHealth Directorate

The Code of Conduct covers the behaviour that Health Directorate expects of its employees including honesty, respect, confidentiality, professionalism and fairness.

www.health.act.gov.au/c/health?a=da&did=10108215&pid=1145411329

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DGD11-094

Feedback, complaints and complimentsACT Healthcare Survey:

Assessing consumer satisfaction and experience

Health Directorate is surveying consumers regarding their experiences and levels of satisfaction with its services through the ACT Healthcare Survey.

www.health.act.gov.au/c/health?a=da&did=10101609&pid=1254789026

Consumer Feedback Management Policy

Health Directorate

This policy outlines the general principles and approach to be adopted by all Health Directorate staff for the management of consumer feedback, which includes complaints, compliments and comments.

http://health.act.gov.au/c/health?a=dldivpoldoc&document=984

Listening and Learning: Consumer Feedback

Standards Health Directorate

The standards provide a framework for the effective management of consumer feedback and the use of that information to improve the way services are delivered.

www.health.act.gov.au/c/health?a=&did=10047697

Information and health records

ACT Health Records (Privacy and Access)

Act 1997

The Health Records Act requires Health Directorate to create and keep health records in a manner that ensures the privacy of health information, and the opportunity to access information held in health records.

http://health.act.gov.au/c/health?a=sp&did=11080324

Freedom of Information (FOI) Act 1989

Information Sheet

An information about the FOI Act which gives consumers the legal right to: see documents held by ACT

Ministers, their departments and some statutory authorities;

ask for information concerning them to be changed if incomplete, out of date, incorrect or misleading;

appeal against a decision not to grant access to a document or personal record.

www.cmd.act.gov.au/__data/assets/pdf_file/0017/113606/foi-information-sheet.pdf

Participation and engagementCitizen Centred

Governance Discussion paper

The discussion paper aims to improve community engagement and feedback.

www.cmd.act.gov.au/__data/assets/pdf_file/0017/113633/citizen-centred-governance.pdf

Consent To Treatment Policy & Procedure

The policy provides all Health Directorate staff with information and support to assist in meeting legal obligations to gain valid informed consent.

www.health.act.gov.au/c/health?a=dlpubpoldoc&document=1117

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DGD11-094 Participation and engagement – continued –

Consumer and Carer Participation Policy

Mental Health ACT

The policy aims to improve the safety and quality of service delivery through improving consumer participation and satisfaction with mental health services.

www.health.act.gov.au/c/health?a=da&did=10050411&pid=1151364929

Engaging Canberrans A guide to community

engagement

This document provides advice on ways the ACT Government could strengthen its practice of community engagement, and how engagement can more effectively contribute to government decision-making.

www.communityengagement.act.gov.au/__data/assets/pdf_file/0007/240883/communityengagement_FINAL.pdf

Reconciliation Action Plan 2011-2012

Health Directorate

The RAP aims to bring about change by creating a health environment that is culturally sensitive and aware that reconciliation between Aboriginal and Torres Strait Islander peoples and other Australians is an important element of our organisation's commitment to close the life expectancy gap.

http://health.act.gov.au/health-services/aboriginal-torres-strait-islander/information/reconciliation-action-plan-2011-2012

Towards a Patient andFamily-Centred Care Model

in the ACT

A discussion paper to initiate discussion and seek feedback about future directions in patient centred care within ACT.

www.health.act.gov.au/c/health?a=sendfile&ft=p&fid=1300337932&sid=

The Social Compact The Social Compact is a statement of understanding about the relationship between the ACT Government and the community sector by articulating the principles of good communication and partnership.

www.communityengagement.act.gov.au/__data/assets/pdf_file/0014/71123/Social_Compact.pdf

Page 31 of 35

DGD11-094Appendix 6

Useful national & international policies on consumer / carer participation

Australian Charter of Healthcare Rights

The Australian Charter of Healthcare Rights summarises the basic health rights that patients and consumers are entitled to receive when accessing healthcare services throughout Australia and provides a platform for discussions between patients, consumers, families, carers and healthcare providers about their rights relating to access, safety, respect, communication, participation, and privacy.

www.health.gov.au/internet/safety/publishing.nsf/Content/com-pubs_ACHR

Charter on the Rights of Children and Young

People in Healthcare Services in Australia

The Australian charter aims to protect the rights of children who experience illness, injury and disability differently to adults and are therefore vulnerable or susceptible to harm and require special care and support.

www.wcha.asn.au

Consumer Engagement Statement

Consumer Engagement Statement for the Australian Commission on Safety and Quality in Health Care.

www.health.gov.au/internet/safety/publishing.nsf/Content/0EE542BF224D4227CA2574890019A935/$File/Consumer-Engagement.pdf

Consumer engagement framework for health in

Queensland

The framework aims to assist health consumers to better engage with their healthcare and the health system to achieve better health outcomes at an individual, service and broader agency level.

www.health.qld.gov.au/hcq/publications/ceframework_web.pdf

Good Medical Practice: A Code of Conduct for Doctors in Australia

The Code defines clear, nationally consistent standards of medical practice, and was designed to reflect the understanding of both the community and the medical profession about the accepted standards of good professional conduct of Australia's doctors in modern medical practice.

www.amc.org.au/index.php/about/good-medical-practice

Doing it with us not for us: Participation in your

health system 2006-2009

This document from Victoria provides a comprehensive strategic framework for consumer, carer and community participation including a participation evaluation model.

www.health.vic.gov.au/consumer/pubs/doing.htm

Evaluation and Quality Improvement Program

The National Safety and Quality Health Service Standards (NSQHSS) provides healthcare organisations with an organisation-wide framework to deliver a consumer-centred service. NSQHSS includes standards, a self-assessment process and systematic external peer review survey.

http://www.safetyandquality.gov.au/

Improving health services through consumer

participation: A resource guide for organisations

This guide aims to assist health care organisations to increase consumer participation in the planning, management and evaluation of their organisations.

www.healthissuescentre.org.au/documents/items/2008/08/226533-upload-00001.pdf

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DGD11-094

Useful national & international policies – continued -

Mental Health Statement of Rights and

Responsibilities

This Statement aims to ensure that consumers, carers, advocates, service providers and the community are aware of their rights and responsibilities and can be confident in exercising them.

www.health.act.gov.au/c/health?a=dlpubpoldoc&document=827

National Safety and Quality Framework

The Framework describes a vision and direction to improve the safety and quality of health care in the Australian health system.

www.health.gov.au/internet/safety/publishing.nsf/Content/NSQF

Participation indicatorsParticipation in your

health service system: Victorian consumers,

carers and the community

The Consultation paper provides an overview on the use of performance indicators,and recommends a minimum set of participation performance indicators for the acute and sub-acute areas.

www.health.vic.gov.au/consumer/downloads/participation_indicators.pdf

Patient-Centred Care: Improving Quality and

Safety by Focusing Care on Patients and

Consumers Discussion paper

This discussion paper explores the nature, benefits and approaches to patient-centred care, which is respectful of, and responsive to, the preferences, needs and values of patients and consumers.

www.health.gov.au/internet/safety/publishing.nsf/Content/com-pubs_PCCC-ImpQandS-discusspaper

The Eight Picker Principles of Patient-

Centred Care

The Eight Picker Principles of Patient-Centred Care define the primary dimensions of patient-centred care.

http://pickerinstitute.org/

Ten tips to Safer Health Care

This booklet aims to assist people to become more actively involved in their health care, including how they can work in partnership with health care providers.

www.safetyandquality.gov.au/internet/safety/publishing.nsf/Content/BE79FB82644728ABCA2571C0000330

FB/$File/10tipsclnbox.pdf United Nations

Brisbane Declaration on Community Engagement

The Declaration aims to act as a catalyst for mobilising the global community and developing common understanding, shared visions and goals for community engagement.

www.getinvolved.qld.gov.au/engagement/initiatives/ic-engaging-comm/brisbane-declaration/brisbane-declaration.html

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DGD11-094

References ACT Health, Come to the Table: A Discussion Paper, A proposed model for effective and

genuine participation of consumer/carer across Mental Health ACT, June 2006 http://health.act.gov.au/health-services/mental-health-act/consumer-and-carer-participation

ACT Government, Your Guide to Engaging with the Community, ACT Government Community Engagement Manual, 2005 www.communityengagement.act.gov.au/__data/assets/pdf_file/0018/71118/community_engagement_manual.pdf

ACT Government, Caring for Carers Policy, 2003 www.dhcs.act.gov.au/wac/strategic__policy/carers

ACT Government Human Rights ACT, 2004 www.legislation.act.gov.au/a/2004-5/current/pdf/2004-5.pdf

ACT Government Raising the standard, Section 1 Good practice standards for community service organisations January 2002 www.health.act.gov.au/c/health?a=dlpubpoldoc&document=831

ACT Health, ACT Health Corporate Plan 2010-2012, Canberra 2010 http://health.act.gov.au/c/health?a=dlpubpoldoc&document=2144

ACT Health, Consumer Feedback Standards, Listening and Learning, ACT, 2003 www.health.act.gov.au/c/health?a=dlpubpoldoc&document=856

ACT Carers Recognition Legislation Amendment Act 2006 www.legislation.act.gov.au/a/2006-47/20070528-30681/pdf/2006-47.pdf

Arnstein, Sherry A Ladder of Citizen Participation, JAIP, Vol. 35, No. 4, July 1969 http://lithgow-schmidt.dk/sherry-arnstein/ladder-of-citizen-participation.pdf

Consumer Focus Collaboration, 2000, Improving Health Services Through Consumer Participation: A Resource Guide for Organisations www.healthissuescentre.org.au/documents/items/2008/08/226533-upload-00001.pdf

Declaration of Alma-Ata International Conference on Primary Health Care, Alma-Ata, USSR, September 1978 www.who.int/hpr/NPH/docs/declaration_almaata.pdf

Health Consumers Queensland, (HCQ) Consumer Engagement Framework for health in Queensland, 2010 www.health.qld.gov.au/hcq/publications/ceframework_web.pdf

Moore, Kate, Consumer and Provider Partnerships: What makes them work, The Consumer and Provider Partnerships in Health Project Australian Government Department of Health and Ageing, February 2003 www.healthissuescentre.org.au/documents/items/2008/08/226134-upload-00001.pdf

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National Health & Medical Research Council, Commonwealth of Australia, Summary Statement on Consumer and Community Participation in Health and Medical Research, 2001 www.nhmrc.gov.au/publications/synopses/r22syn.htm

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