DGD11-094
Consumer & Carer
Participation
Framework
October 2011
DGD11-094
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 [email protected].

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:
[email protected]
www.health.act.gov.au | www.act.gov.au
Enquiries: Canberra 13ACT1 or 132281
Page 2 of 35
DGD11-094
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 .................................................... 32
References.......................................................................................................... 34
Page 3 of 35
DGD11-094
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
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)
Page 4 of 35
DGD11-094
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
Page 5 of 35
DGD11-094
What is the purpose of this Framework?
1
2
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.
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.
Page 6 of 35
DGD11-094
6
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
Page 7 of 35
DGD11-094
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.
Page 8 of 35
DGD11-094
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.
Page 9 of 35
DGD11-094
What enables and facilitates greater participation?
17
18
- continued -
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.
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.


Page 10 of 35
DGD11-094
What limits and prevents greater participation?
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.
Page 11 of 35
DGD11-094
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.
The ladder of participation – a continuum
a)
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:
28

Non-participation:

Tokenism:

Citizen power: partnership
manipulation
informing
therapy;
consultation
placation;
delegated power
citizen control.
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
29
Consultation
Involvement
Collaboration
Empowerment
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;
Page 12 of 35
DGD11-094
a) The ladder of participation - continued 30
31

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.
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.
Page 13 of 35
DGD11-094
Examples of ACT initiatives that promote consumer participation
Five elements in the continuum of engagement
Points of engagement
Information
Consultation
Involvement
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
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
Individual
Service delivery level
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
Collaboration
Joint projects arise from the
Health & HCCA Liaison
Committee
Funding provided to Mental
Health Consumers Network
Empowerment
Mental health consumers
employed as consumer
advocates & consultants
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
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
Territory wide level
Note: Additional details about Health Directorate initiatives can be found in the appendices of this document.
Page 14 of 35
DGD11-094
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 patientcentred 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
Page 15 of 35
DGD11-094
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

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.
I can access services to
Access address my healthcare
needs
Consumers offer insights into meaningful &
respectful participation and health care

The 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.

I receive safe and high
quality health services,
Safety provided with
professional care, skill
and competence

Katrina’s story
They 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.
Kate’s story
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.
Page 16 of 35
DGD11-094
Australian Health
Care Rights
The care
provided shows
respect to me
Respect and my culture,
beliefs, values
and personal
characteristics.
Consumers offer insights into opportunities
for improvement in healthcare
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.
Consumers offer insights into meaningful &
respectful participation and health care
Leigh’s story
On 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.
Angela’s story
I receive open,
timely and
appropriate
Communication communication
about my health
care in a way I
can understand
We 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.”
Brian’s story
I may join in
making
decisions and
Participation choices about
my care and
about health
service planning.
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.
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 story
Leigh 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.
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 story
They 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.
Page 17 of 35
DGD11-094
Australian Health
Care Rights
Consumers offer insights into opportunities
for improvement in healthcare
Consumers offer insights into meaningful
& respectful participation and health care
Amanda’ story
My personal privacy
is maintained and
proper handling of
Privacy
my personal health
and other information
is assured
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 story
There 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 story
The 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
Frank’s story
I can comment on or
complain about my
Comment care and have my
concerns dealt with
properly and
promptly.
Peter’s story
I 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.
I was not happy with the care that was provided to my
mother, but I just didn’t know who I should speak to.
Michael’s story
I 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.
Page 18 of 35
DGD11-094
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:



40
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
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 1
Page 19 of 35
DGD11-094
Glossary of terms & definitions
This 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 Processes of creating dynamic relationships that enable consumer / carer
participation 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 Consumer engagement is more than participation, conveying
engagement the idea that a person or group of people are occupied, focused,
and committed to an issue and ready to take ownership of
the outcomes. It is a dynamic process that can never be fully controlled.
Page 20 of 35
DGD11-094
Consumer Consumers (patients) experience best practice care suited to their needs
experience and circumstances informed by high quality information and seamless and
safe care when transferring between settings.
Consumer Refers to information provided by consumers - in their own words and in
feedback 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 People nominated by and accountable to a group of consumers or carers
representatives 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 The capacity to respond to the health care issues of diverse communities.
responsiveness
Cultural awareness Training for non-Indigenous Australians to increase their understanding of
training 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 HIS is a process that involves assessing the likely risks and benefits to
Statement 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 Providing care that is respectful of and responsive to individual patient
centred care preferences, needs and values and ensuring patient values guide all
clinical decisions.
Patient journey & Patient journey describes the touch points or areas of care encountered by
patient experience a patient.
Patient experience is their interpretation of their journey.
Page 21 of 35
DGD11-094
Healthcare Good quality care is defined as safe, effective, patient centred, timely,
quality 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 Patient-centred health care refers to healthcare that is respectful of, and
care 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
DGD11-094
Appendix 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 Ageing
www.health.gov.au/internet/main/publishing.nsf/Content/Glossary
Page 23 of 35
DGD11-094
Appendix 3
Useful ACT contacts
Aboriginal and Torres Strait
Islander Health Portal
The portal provides information
on Aboriginal and Torres Strait
Islander health issues, health
organisations, policies and
research including cultural events
of significance.
Web:
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.
An ACT Government portal of
information and resources relating
to consumer engagement and
engagement processes.
Phone: 6205 2551
Email: [email protected]
Web:www.dhcs.act.gov.au/matsia/atsia/asti_ele
cted_body
ADACAS provides individual
advocacy for people with
disabilities, the elderly and their
carers.
Phone: TTY 02 6242 5065
Email: [email protected]
Web:
www.adacas.org.au
AGA provides information,
resources, support and advocacy
for transgender, intersex, gender
queer and other gender variant
people and their supporters.
Email:
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 7800
Email: [email protected]
Web:
www.hcca.org.au
Consumer Feedback and
Engagement Team
CFET coordinates responses to
feedback received from
consumers and their families.
Phone: 62077627
Email: [email protected]
Web:
www.health.act.gov.au
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 5796
Email: [email protected]
Web:
www.actmhcn.org.au
ACT Community
Engagement Online
ACT Disability, Aged &
Carer Advocacy Service
A Gender Agenda
Health Directorate
ACT Mental Health
Consumer Network
http://health.act.gov.au/healthservices/aboriginal-torres-straitislander
Phone: 6205 8618
Email:[email protected]
v.au
Web:mwww.communityengagement.act.gov.au/i
ndex
[email protected]
Page 24 of 35
DGD11-094
Useful 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.
ACT Health Services
Commissioner
Phone: 6287 8099
Email: [email protected]
Web: www.actml.com.au
The Health Services Commissioner
investigates complaints, promotes
improvements; and advocates for the rights
of consumers of health services.
ACT Human Rights Commission
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 1670
Fax: 6279 1610
Email: [email protected]
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:
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:
Fax:
Email:
Web:
CYCLOPS ACT
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 2432
Email: [email protected]
Web:
www.cyclopsact.org
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:
Email:
Web:
6244 3740
[email protected]
www.patchnetwork.org
PWD ACT is a peak consumer body
representing people with disabilities who
live in the ACT.
Phone:
Email:
Web:
6286 4223
[email protected]
www.pwdact.org.au
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 0707
Email: [email protected]
Web:
www.publicadvocate.act.gov.au
Connecting Young Carers
to Life Opportunities and
Personalised Supports
Patch Family Advisory
Network
People with
Disabilities ACT
Public Advocate ACT
Phone: 6205 2222
Email: [email protected]
Web: www.hrc.act.gov.au
6244 2447
6282 3777
6285 3422
[email protected]
www.cota-act.org.au
Page 25 of 35
DGD11-094
mental 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:
Email:
Web:
6248 8577
[email protected]
www.marss.org.au
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
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 1984
Web:
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 2166
Email: [email protected]
Web:
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 6842
Email: [email protected]
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:
Web:
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 3540
Email: [email protected]
Web: www.youthcoalition.net
Respecting Patient Choices
Coordinator
Health Directorate
Self Help Organisations
United Together
Web:
www.health.act.gov.au/c/health?a=da&did=101
01609&pid=1284680112
6284 6222
www.winnunga.org.au
Page 26 of 35
DGD11-094
Appendix 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 9955
Email: [email protected]
Web:
www.achs.org.au/Home
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 3755
Email: [email protected]
Web:
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 3600
Email: [email protected]
Web:
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:
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 memberbased non-government organisation,
CHF helps shape Australia's health
system by representing and involving
consumers in health policy and program
development.
Phone:
Email:
Web:
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 022 222
Email: [email protected]
Web: www.healthinsite.gov.au
HIC is an independent, not-for-profit
organisation that promotes equity &
consumer perspectives in the Australian
health system.
Phone: 03 9479 5827
Email: [email protected]
Web:
www.healthissuescentre.org.au
Australian Women's
Health Network
Carers Advisory and
Counselling Line
Health Issues Centre
Email:
Web:
6122 9900
1800 242 636
[email protected]
www.carersaustralia.com.au
6273 5444
[email protected]
www.chf.org.au
Page 27 of 35
DGD11-094
Useful national contacts - continued IAP2
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
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:
Email:
Web:
1800 640 695
[email protected]
www.phio.org.au
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:
Email:
Web:
6282 5755
[email protected]
www.fecca.org.au
Mental Health Council
of Australia
MHCA is the peak, national nongovernment 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 3100
Email: [email protected]
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 0644
Email: [email protected]
Web:
www.naccho.org.au
Community Participation
Spectrum
Private Health
Insurance Ombudsman
Federation of Ethnic
Communities’ Council of
Australia
Page 28 of 35
DGD11-094
Appendix 5
Useful ACT policies and documents on consumer / carer participation

Accessibility
Public Consultations
and Forums Access
Guidelines

www.communityengagement.act.gov.au/relat
ed_act_government_plans_and_strategies
Advocacy and representation
Consumer, Carer and
Community Representative
Reimbursement Policy
Health Directorate

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.
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=110
57972
Charter of rights and codes of conduct
ACT Carers Charter
Discussion paper and
proposed charter
ACT Charter of Rights for
People who experience
Mental Health Issues
Code of Conduct
Health Directorate
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/wpcontent/uploads/2010/10/ACT-CarersCharter-Discussion-Paper1.pdf
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/healthservices/mental-health-act/charter-of-rights
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=1
0108215&pid=1145411329
Page 29 of 35
DGD11-094

Feedback, complaints and compliments
ACT 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.
Consumer Feedback
Management Policy
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.
Health Directorate
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=da&did=1
0101609&pid=1254789026
http://health.act.gov.au/c/health?a=dldivpold
oc&document=984
www.health.act.gov.au/c/health?a=&did=100
47697
Information and health records
ACT Health Records
(Privacy and Access)
Act 1997
Freedom of Information
(FOI) Act 1989
Information Sheet
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=1
1080324
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 engagement
Citizen Centred
Governance
Discussion paper
Consent To Treatment
Policy & Procedure
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
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=dlpubpold
oc&document=1117
Page 30 of 35
DGD11-094
 Participation and engagement – continued –
Consumer and Carer
Participation Policy
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=1
0050411&pid=1151364929
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/__d
ata/assets/pdf_file/0007/240883/communitye
ngagement_FINAL.pdf
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/healthservices/aboriginal-torres-straitislander/information/reconciliation-actionplan-2011-2012
Towards a Patient and
Family-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&f
t=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/__d
ata/assets/pdf_file/0014/71123/Social_Comp
act.pdf
Mental Health ACT
Engaging Canberrans
A guide to community
engagement
Reconciliation Action Plan
2011-2012
Health Directorate
Page 31 of 35
DGD11-094
Appendix 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/publis
hing.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/publis
hing.nsf/Content/0EE542BF224D4227C
A2574890019A935/$File/ConsumerEngagement.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/goodmedical-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/d
oing.htm
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 selfassessment process and systematic external
peer review survey.
http://www.safetyandquality.gov.au/
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/docume
nts/items/2008/08/226533-upload00001.pdf
Evaluation and Quality
Improvement Program
Improving health services
through consumer
participation: A resource
guide for organisations
Page 32 of 35
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=dlpub
poldoc&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/publis
hing.nsf/Content/NSQF
Participation indicators
Participation 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/downlo
ads/participation_indicators.pdf
Patient-Centred Care:
Improving Quality and
Safety by Focusing
Care on Patients and
Consumers
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/publis
hing.nsf/Content/com-pubs_PCCCImpQandS-discusspaper
The Eight Picker Principles of Patient-Centred
Care define the primary dimensions of patientcentred care.
http://pickerinstitute.org/
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/saf
ety/publishing.nsf/Content/BE79FB8264
4728ABCA2571C0000330FB/$File/10tip
sclnbox.pdf
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/engagemen
t/initiatives/ic-engaging-comm/brisbanedeclaration/brisbane-declaration.html
Discussion paper
The Eight Picker
Principles of PatientCentred Care
Ten tips to
Safer Health Care
United Nations
Brisbane Declaration on
Community Engagement
Page 33 of 35
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_enga
gement_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/20045/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/2008/08/226134upload-00001.pdf

Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD, Methods of consumer
involvement in developing healthcare policy and research, clinical practice guidelines and
patient information material, John Wiley & Sons Ltd, 2006
http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD004563/frame.html

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

National Resource Centre for Consumer Participation in Health, Methods of Consumer
Participation, “Fact Sheet No 2”
www.participateinhealth.org.au/Clearinghouse/Docs/nrcfactsheetmethodsmay02.doc

Not Just A Token Rep Project, The Little Purple Book of Community Rep-ing, 2003 (3rd ed)
Page 34 of 35
DGD11-094
www.healthissuescentre.org.au/documents/items/2008/08/226726-upload-00001.pdf

Ottawa Charter for Health Promotion, First International Conference on Health Promotion,
Ottawa, 21 November 1986 www.who.int/hpr/NPH/docs/ottawa_charter_hp.pdf

Putnam, Robert, Bowling Alone: The Collapse and Revival of American Community, Simon
and Schuster, 2000 http://bowlingalone.com

Queensland Health Position Statement, Consumer and Community Participation, January
2003 www.health.qld.gov.au/quality/Publication/PositionStatement.pdf

Romios, McBride and Mansourian, Consumer Participation and Culturally and Linguistically
Diverse Communities: A Discussion Paper Health Issues Centre, March 2007
www.healthissuescentre.org.au/documents/items/2008/04/203594-upload-00001.pdf

State of Victoria, Department of Human Services, Doing it with us not for us, Participation in
your health system 2006-2009, Melbourne 2005
www.health.vic.gov.au/consumer/pubs/doing.htm

Patient-Centred Care Improving Quality and Safety by Focusing Care on Patients and
Consumers Australian Commission on Safety and Quality in Health Care (ACSQHC),
www.safetyandquality.gov.au
Page 35 of 35