Consumer and Carer Participation Framework

DGD11-094

Consumer & Carer
Participation Framework

October 2011

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

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© 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:

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

Enquiries: Canberra 13ACT1 or 132281

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 XXX2

References XXX4

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)

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
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.
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
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.
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