wchn consumer orientation booklet -...

Women’s and Children’s Health Network

Consumer Orientation BookletA Guide to Consumer Engagement in the Women’s and Children’s Health Network (WCHN) of South Australia

“Nothing about consumers without consumers”

Contents

7 Chapter One Welcome to WCHN Consumer Engagement

26 Chapter Two Getting Started

45 Chapter Three WCHN Tools of Engagement

55 Chapter Four WCHN Consumer Engagement for Children and Young People

59 Chapter Five Consumer and Community Engagement and Research

63 Chapter Six Consumer and Community Engagement Unit

67 Chapter Seven Let’s Do It!

Consumer Orientation Booklet page 5

Address from the Director Consumer and CommunityThe Women’s and Children’s Health Network (WCHN) respects and encourages robust partnerships with our consumers, carers and community stakeholders. The network wants our consumers to be “movers and shapers” rather than “users and choosers” of healthcare provision.

To do this well, the network is driven to genuinely share the decision making with our consumers and caregivers. It is an “everyday task” for all staff. It happens at the point of care and at an organisational and strategic levels. After all, consumer engagement, is the process of enabling people to increase control over, and to improve, their health and the health outcomes for the community.

I am enthused by the high level of interest from our public wanting to partner with the network. I lead a unit which values all forms of participation, there are no minimum requirements. This orientation booklet aims to demonstrate how:

> the organisation provides a mutual and supportive environment for engagement

> partnerships lead to a strengthening of community health actions

> the organisation supports the community workforce to flourish.

The responsibility for supporting our consumers is shared among many staff in the organisation and it is the role of my unit to provide consultancy, high-level advice and advocacy for efficient and consistent health consumer engagement.

The purpose of this guide is to inform our consumers, carers and community members of our robust approach to consumer and community engagement. The orientation booklet integrates with WCHN and SA Health policies, procedures and guidelines.

Welcome to consumer and community engagement in the WCHN. It is great to have you on board and remember “healthcare is too important to stay the same”.

Allan Ball Director Consumer and Community Engagement

Chapter One Welcome to WCHN Consumer Engagement

Consumer Orientation Booklet page 9page 8


Introduction: What is Consumer and Community Engagement?

Consumer and Community Engagement can mean many things, but in essence it is when a health service or organisation consults, liaises and participates with consumers and carers to improve service quality at all levels, from the individual to the state-wide level. In keeping with this, WCHN believes it’s important to involve consumers at all levels of participation. The degree at which consumer participation is a part of a health service’s strategy has been increasing in recent years, and is part of the National Safety and Quality Standards. The name of the approach we use is called the collaborative approach. This asserts that decisions are made in partnership with consumers, clinical staff and executive, from the bedside to state-wide committees.

What is a Consumer?

Consumers are people who use, or are potential users of the health service. They can be patients, families, client, carers, friends and other support people.

Who can be a Consumer and Carer Representative?

A consumer representative can be a patient, client, carer, parent, family member, friend, or potential patient of the WCHN.

Who can be a Community Representative?

Community Representatives are individuals or representatives of organisations that have an interest in the WCHN.

Why does the network want consumer input?

WCHN has made a commitment to consumer and carer input. This is reflected in many documents and policies that have been produced in the last few years, co-designed with consumers and carers and the Health Consumer’s Alliance of South Australia. In line with this commitment, a strategy for 2015-2018 has been made, to give direction to how the Network approaches consumer engagement and to implement participation into practice. The overall intent of partnering with our consumers in collaboration and co-design is to create a health service that responds to and exceeds consumer needs.

To be innovators and world leaders the WCHN wants to partner with our consumers to understand what truly will advance care and ensure that services provided are the most comfortable.

Partnering with our consumers also allows the Network to work across a spectrum of engagement. A spectrum acknowledges that strategies and activities vary according to the characteristics, circumstances, needs and purpose of the engagement goal.

The WCHN consumer and community engagement approach is underpinned by the International Association for Public Participation (IAP2).

Partipcaticpation can achieve:

> closer links with consumers and safety and quality outcomes

> better levels of health literacy

> increase positive reputation, brand awareness and confidence by the community in services provided.

What are different layers of consumer and carer engagement?

WCHN provides multiple ways for consumers, carers and the community to be involved in decision making and creating positive changes. Check out page 11 of this guide for full details.

WCHN Consumer carer and Community Engagement Vision

To legitimize the voice of the consumer, carer and community through transformational engagement methodologies across individual, ward or service and organisational levels. To plan, decide and act as a united team by valuing the triangulation of lived experience, staff knowledge and research. An ethical and trusted participatory democracy practice within a healthcare organisation, requires an inclusive attitude, that never shy’s away from obtaining better health outcomes.

WCHN Community Profile

The WCHN encompasses functions and services such as; Women’s and Children’s Hospital, Child and Adolescent Mental Health Services, Child and Family Health Services, Child Protection Service, Children’s Disability Services, Youth Health Service, Women’s Health Service and Yarrow Place Rape and Sexual Assault Service.

For a full community profile, please contact the Director Consumer and Community Engagement.

WCHN Consumer and Community Engagement Approach

The organisation is committed to ongoing and continuous feedback at individual, ward or service and organisational levels from all of our consumers and carers.

Our overall aim is “nothing about consumers or carers, without consumers and carers”. We achieve this by having a Consumer and Community Engagement Strategy, embedding 6 principles of engagement (page 13 and 14) and operating within a Person and Family Centred Care Charter.

To strengthen the approach, a local procedure is followed by all WCHN Staff titled “WCHN Consumer and Community Engagement”.

WCHN completes all organisational consumer engagement by applying the following:

> Knowing why we are engaging our consumers, carers and community.

> Understanding who we are engaging.

> Researching the history of engagement related to the specific topic .

> Planning engagement methodology in partnership with our consumers, carers and community.

> Encouraging innovative approaches to participation and ensuring that gather experience is delivered as an experience.

> Creating an open, transparent and accountable communication process by reporting outcomes.

Our strategy expects the following with regards to consumer and community engagement:

> Members of our WCHN Community will have reasonable, timely, meaningful and ongoing opportunities to gain access to information about proposals, service reviews, procedural review and projects.

> Engagement will be weighted towards public consultation at an early stage.

> All methodologies will seek to foster and encourage constructive conversations in line with developmental status.

> Insofar as is reasonable, our community will be provided with reasons for decisions that impact health service provision.

http://wch.sa.gov.au/

http://wch.sa.gov.au/services/az/divisions/mentalhealth/index.html

http://wch.sa.gov.au/services/az/divisions/mentalhealth/index.html

http://www.cyh.com/SubDefault.aspx?p=98


http://wch.sa.gov.au/services/az/other/allied/childprot/index.html

http://wch.sa.gov.au/services/az/other/allied/disability/disability_services.html

http://wch.sa.gov.au/services/az/other/allied/disability/disability_services.html


http://www.whs.sa.gov.au/

http://www.whs.sa.gov.au/

http://www.sahealth.sa.gov.au/wps/wcm/connect/Public+Content/SA+Health+Internet/Health+services/Yarrow+Place+services/

http://www.sahealth.sa.gov.au/wps/wcm/connect/Public+Content/SA+Health+Internet/Health+services/Yarrow+Place+services/



WCHN Consumer and Community Engagement Models

Model 1 is the WCHN integrated model for Consumer and Community Engagement. It demonstrates how we actively involve the wider community in decision-making processes on issues that affect them and provide confidence that we have the right method to do this. To achieve authentic engagement we ensure that consumer feedback on experience, consumer and community engagement and age, cultural and developmental status are joined. Model 2 demonstrates the way in which we have chosen to engage our community and is underpinned by the International Association for Public Participation (IAP2) model.

> WCHN Child and Youth Engagement Framework

> SA Health Guide to working with Aboroginal and Torres Strait Islander Populations

> Effective Health Literacy

Model 1: WCHN integrated model for Consumer and Community Engagement

WCHN Consumer and Community

Engagment

Consumer & Carer

Experience

Consumer & Carer

Engagement

Age, Cultural and

Developmentally appropriate engagement

> 4 Pillars of Person and Family Centered care

> WCHN Consumer Feedback on Experience Framework

> Partnerships and Shared Decision Making

> Physical Comfort

> 6 Principles of engagement International Assciation of Public Participation (IAP2)

> Apprecitive Inquiry

> WCHN Public Promotion Framework

Model 2: WCHN spectrum of individual, ward or service and organisational engagement

Levels of engagement

Inform Consult Partner Empower Delegate

Consumer, Carer and Community Role

Passive Reactive Participatory

WC

HN

Go

als To provide our

consumers, carers and community accurate information so they can be kept informed about what is happening, why it is happening and how they can get involved.

To obtain consumer, carer and community feedback at an individual, ward or service and organisational levels.

To co-design with our consumers, carers and community members.

Leadership

To provide time, space and opportunity for our consumers and carers to significantly make decisions.

Leadership

To place final-decision making and leadership in the hands of consumers and carers.

WC

HN

Pro

mis

e To keep you informed.

To close the feedback loop.

To utilize communication methods that you are skilled in using.

To select the best method to hear your feedback.

To acknowledge concerns and suggestions.

To embed feedback into processes and decisions.

To identify solutions, using an appreciative inquiry model to individual, ward or service and organisational concerns, issues and problems.

To hold think-tanks, community forums and resource a Consumer Governance Structure to support partnerships.

To look to consumers and carers for direct advice, innovation, formulating solutions in individual, ward or service or organisational decision-making.

To support consumer and carer representative quality improvement roles.

To implement what you decide in your or your families’ treatment.

To give consumers, carers and the community the power to make decisions, recommendation and verdicts.

To support lived experience

Div

ersi

ty

Mat

ters To acknowledge the scope of influence those members from the Aboriginal, Torres Strait Islander and Migrant

community have into consumer and community engagement practice. To provide meaningful engagement opportunities that do not overwhelm or indirectly cause further harm to cultural practice. To ensure that elders and community leaders are part of the planning process and to understand history of engagement, demographics, seasonal issues, local interest groups, traditional owners, political climate and history prior to launching a community engagement project.

Dev

elo

pm

enta

l St

atu

s M

atte

rs To ensure that children and young people have greater control over their lives through participation; the organisation is committed to purposeful and inclusive engagement. We value that a “one-size-fits-all” approach does not work and authentic child and youth engagement starts with knowing the developmental status of our children and youth and matching this with the right engagement methodology.

Hea

lth

Li

tera

cy To promote choice, option and decision talk at individual, ward or service and organisational levels we will make sure that our consumers, carers and community members are able to access and understand health-related information. We will do this by integrating health literacy into staff education, embed health literacy into all of our operating systems, choose the right method of communication, ensure that the right language and readability levels of our communication methods are thoughtfully considered and avoid jargon.



What are the ways I can get involved and what will I need to do?There are multiple ways to get involved in decision making and making positive changes within the organisation. There are four paths that you wish to take, each path tailors participation to meet your cultural, developmental, personal and literacy needs.

We realize that life happens and your personal changes may affect your level of engagement. That is OK, if you decide that do not want to participate at the same level or be more involved, you can at any time. Below will provide you with the various levels of how you can get involved:

Be informed as a Consumer or Carer

Activity Are there any special conditions?

Do I get reimbursed for my time? How do I do it?

Sign up to the WCHN Database to receive the monthly e-zine.

No No Email the Director Consumer and Community Engagement that you want to join the mailing list.

Be heard as a Consumer or Carer



> Complete a survey

> Attend a focus group

> Share your story at an educational session

> Come to a community forum

> Participate in a media article

> Attend a Family Huddle

> Attend a Networking Event

> Participate in Kids Klub

> Write an article for the consumer e-zine

You will not need to complete a DSCI clearance for these activities as they are considered periodic or time-limited engagements where you are sharing your experiences.

For some activities, you will be reimbursed for your time and car-parking.

Completing a survey does not attract a reimbursement.

For each engagement, opportunity there will be an email or notice on Basecamp. This will contain information on how to register your interest to get involved.

Be a Crowdsourcer as a Consumer or Carer



Participate on our 24.7 online consultation hub known as “Basecamp”. You will be asked to review health brochures, complete surveys and you will have access to real-time newfeed, research and articles relating to child, youth and women’s health.

You will not need to complete a DSCI clearance to be involved online.

You will need to read and agree to an online code of conduct.

You will need access to a smart phone or tablet and/or PC to access the online platform.

No Email or text the Director Consumer and Community Engagement with “sign me up to Basecamp”.

The Director will send initiate an invite and send you the code of conduct to agree too.

You will than be asked to create a profile.

Be a Consumer or Carer Representative



Sign up, become a WCHN Consumer Representative, and sit on a committee. As a Consumer Representative you will than be invited to complete work associated with your role on the committee. This could look like:

> participate in a working group

> deliver training and capacity development workshops

> attend community functions as a lived experience worker

> coordinate activities relating to consumer feedback on experience

> conduct audit

> write articles

> sit on staff selection panels

> participate in topic-based panels

> implement quality improvements or population-health projects

> Attend conferences and workshops on behalf of WCHN

You will need to complete a DSCI clearance and renew this every three years.

Attend a 5-hour face-to-face orientations session.

You will be issued with an ID Badge.

You will need to complete an online e-learning module “welcome to consumer and community engagement”.

You will need to sign up as a Vendor to be reimbursed.

Yes. You will be reimbursed at $30 per hour for all activities associated with your role on a committee inclusive of training, project work, reading and writing.

You will also be reimbursed for travel and car-parking costs

You will need to complete the WCHN Consumer Membership Form and send to the Director Consumer and Community Engagement.

What can I expect when I am a Consumer or Carer Representative?

You will be considered part of the community workforce and a partner within the Women’s and Children’s Health Network. You will be a member of our team and be provided with meaningful opportunities to create sustainable change. Your time and expertize will be respected. We want you to be proud of your role, have fun, engage to make change and adopt a solution-focused mindset.


OK, I am ready to sign up but before I do, what can I expect across the lifespans of my role?

Key Tasks during the lifespan of a Consumer or Carer Representative

Before During Ending

Sign up to the WCHN Consumer Database.

Complete Operational Checklist on page 58.

Regularly attend scheduled meetings and activities.

Participate in monthly training.

Engage on Basecamp.

Uphold the Code of Conduct.

Renew DSCI clearance every three years.

Complete reimbursement paperwork, and submit within 10 days of a planned activity.

Complete an exit interview with Director Consumer and Community Engagement.

Handback WCHN Consumer ID.




What are the principals for WCHN Consumer and Community Engagement?

All WCHN consumer and community engagement is underpinned by our 6 principles of evidence-based public participation.

Partnership > Shared decision making about improving the consumer experience. Safety and quality and service improvement will be valued.

> Safety and quality of health care will be guided by the lived experience of consumers.

> Consumers and researchers will work in partnerships based on understanding, respect and shared commitment to research that will improve the health and wellbeing of all.

Person and Family-Centred Care > Treating consumers and families with dignity and respect.

> Encouraging engagement in decision making by consumers and families.

> Consumers define who is regarded as family.

> Collaboration between consumers, families and community groups/organisations and health professionals in shared decision making about care and within the Health Network.

> Supporting consumers and families to engage with the Health Network.

> A charter of behaviours will be followed by staff.

Diversity > Engaging with a diverse range of people, in their community.

> The participation of Aboriginal families and groups should be guided by the SA Health guidelines for engaging with Aboriginal People.

> Ensuring engagement processes are culturally safe, and Women’s and Children’s Health Network will approach these sensitively.

Transparency > Leadership and strong commitment to open and inclusive decision making at all levels.

> Engagement influences health policy, planning and system reform.

> A commitment to open disclosure.

> Ensuring that the policy-making process is open, transparent and amenable to external scrutiny to help increase accountability of, and trust in Women’s and Children’s Health Network.

> Performance data is readily accessible to consumers and the community.

Access to Information > Consumers, families, and community groups/organisations will have equal opportunities and multiple channels to access information, to be consulted and to participate.

> Information, education, and health literacy for shared decision making is available.

> Consumers and the community are aware of their rights and responsibilities.

Empathy > An understanding of what it may be like to ‘walk in the consumer’s shoes’.

> Recognising that people come with their own value base and are the experts of their own lives and through experiences.

> Staff, when communicating with consumers, need to ask, listen and validate.



WCHN Person and Family Centred Care Charter

Our core business is the consumer and their family. Our promise to you is to uphold the following pillars of Person and Family-Centred Care:

Treat consumers and their family with dignity and respect.

This means we will:

> Always introduce ourselves, so that consumers know our name and position.

> Speak in a positive and relaxed vocal tone.

> Respect the consumer’s family context as an important aspect of care.

> Always look for opportunities to work in partnership with consumers.

> Make the consumer feel safe, supported and comfortable.

> Explain healthcare rights and ensure the consumer and their family have understood what these mean.

> Respect privacy and confidentiality at all times.

> Facilitate connection to supports within community.

1

Communicate information clearly and openly with the consumer.

This means we will:

> Give information about what services we provide and what consumers can expect from us.

> Check that consumers understand what we are saying and explain all options of treatment.

> Always provide an interpreter when required and double check for misunderstandings.

> Ensure that consumers have enough information to fully understand their health situation.

> Remember to explain the meaning of medical terms and acronyms, and minimise jargon.

> Involve consumers in the formal handover of information from shift to shift and division to division.

> Be honest about any misunderstandings and seek to remedy.

> Actively welcome questions and feedback about consumer experiences under our care.

> Always involve consumers and their family in handover and discharge decisions.

2

Be positive and kind.

This means we will:

> Be welcoming and keep consumer comfort a top priority.

> Actively listen and ensure we understand the needs of the consumer.

> Treat consumers in a calm and mindful manner.

> Be considerate in our conversations with consumers and mindful of those who can overhear discussions.

> Smile.

4

Actively involve consumers in decision making.

This means we will:

> Respect consumers’ right to make decisions regarding their healthcare.

> Support consumers to make informed choices by explaining all treatment options, the possible benefits and harms of those options and the likelihood of the benefits and harms to occur.

> Answer questions from consumers about the care we provide to actively engage them in decision making.

> Provide respectful and thoughtful answers to consumer questions.

3

Our charter is rooted into service delivery and service planning as evidenced by inclusion in annual performance reviews, embedded into training and capacity development, featured at corporate and clinical orientations and provides a steer for strategic directions.

How do these systems and consumer and community engagement fit together?

The simplest approach is to view consumer and community participation as a way of working, or an activity that is part of several systems in place at the WCHN. It reaps significant benefits for both consumers and staff. The outcome of consumer and community participation can be used as a evidence for accreditation, as part of performance management and as well as supporting the attainment of our vision and values in all sphere of organisational activity. Consumer and community engagement is a key pillar or SA Health’s approach to healthcare delivery and is not a separate project or extra work, but part of the way we all do it.

The benefits of Consumer and Community Engagement?

Consumer and community engagement contributes to informed decisions, social justice and sound management. It has a number of pluses in that it:

> Provides the basis for dialogue between the organisation and the patients and clients we serve.

> Provides the WCHN with information about the impact of services on consumers and families

> Can lead to wider definition of health and health outcomes

> Provides the WCHN with information about short and longer term outcomes of care and treatment

> Can focus on the needs of a particular population groups

> Gives communities a greater sense of ownership over services and their health

> Lead to increase understanding of health and health services

> Can empower people to take more responsibility for their health

> Can lead to improve health outcomes through improve knowledge, understanding and empowerment

> Supports clinical decision making including informed consent and shared decision making

> Likely to lead to fewer complaints

> Builds empathic involvement and pride within an organisation

> Improves organisational reputation

Notwithstanding the many benefits of consumer and community engagement, you may come across people who have doubts about its values. You may feel concerned about some aspects of consumer and community engagement, ranging from how much time it will take, what resources will be needed and how to ensure a successful outcome. The extent of participation of consumers, carers and community members can vary depending on a range of factors, such as nature of the issue, the skills of people involved, resources available and consumer interest. It can also depend on whether it is a routine or ongoing process, or whether it is a discrete, one-off, or strategic activity. Similar, consumer participation can happen at the level of the individual staff member, unit or department, division or at the regional or state-wide level.

At WCHN, our vision promotes co-design and shared decision making. So every effort should be made to achieve this degree of consumer and community participation where appropriate. However, this does not mean that you should limit yourself to this level, in some circumstances you will be delegated responsibilities and decision-making to consumers.

Why is the consumer or carer representative in the WCHN considered a researcher?

There are many roles a consumer or carer representative can take on, when working for the organisation. Underpinning all of these roles is the concept of “consumer or carer representative as a researcher”. We want our consumers and carers to represent a broad range of voices, particularity when you are investigating solutions. As a researcher you are encouraged to look at a range of sources in order to establish facts and reach new conclusions. Your individual story and experience are still critical to help understand, explore, examine, inspect and assess how to do things better. As a researcher you are part of a group of others tasked with exploration, analysis, fact-finding, testing, examining and investigating solutions in partnership with WCHN staff.



What are some of the ethical considerations?

Any consumer, carer or community representative must conduct their work in accordance with the WCHN Consumer and Carer Representative Code of Conduct and WCHN Consumer and Carer Representative Agreement. These are discussed at the face-to-face orientation session. The WCHN employs the following ethical rules for all consumer, carer and community engagement: it is the individual choice whether or not to participate.

> an individual’s choice to participate or not is to to be respected and is not to affect the delivery of care and service to them now or into the future.

> the identify of individuals and the information they provide is to be handled confidentially.

> all consumer, carer and community consultation will be conducted with integrity, transparency and underpinned by the six principals of engagement.

> as a representative all your involvement, unless otherwise stated, will be reimbursed in line with SA Health policy

for non-employees.

What is WCHN Consumer Governance Structure?

It is a formal system that coordinates consumer voice. Central to the structure is a peak body known as the Consumer and Community Partnering Council (CCPC). The Governance Structure provides focuses discussion around the needs of consumers. The structure ensures that WCHN hears directly from, and works in partnership with consumers, carers and community members.

The CCPC and sub-groups are either chaired by a Consumer Representative or there is a co-sharing arrangement, involving a WCHN staff member. The CCPC is co-chaired by the Chief Executive Officer and a Consumer Representative. The CCPC has designed its membership to feature a Consumer Representative from each of the following; Child Adolescent Mental Health Services (CAMHS), Child and Family Health Services (CaFHS), Health Literacy Group, Youth Advisory Group, Cultural Roundtable, Citizen Jury, SA Health Partners with Consumers Committee and Person and Family Centred Care Steering Committee.

The structure respects the principles of diversity and the target population group of the organisation.

For full details visit the website www.wch.sa.gov.au/support/consumer/consumer_governance.html

Consumer and Community Partnering Council and Sub-groups

Consumer and Community Partnering Committee (CCPC)What is the committee?

Operates as the principle consumer and community decision-making committee for the Network. It is Chaired by the CEO and a consumer and made up of 17 members from the community including the co-chairs from the operational consumer and community groups. The Executive Director of Corporate Services and Director of Consumer and Community Engagement round out the membership of the committee. Additionally, the peak safety and quality committee and SA Health equivalent consumer committee frequently report to this committee..

When do they meet?

Meetings are held bi-monthly and standing reports include CEO update, recommendations for examination from operational consumer and community groups, and consultations on strategic affairs for the Network.

Why do they meet?

> The CCPC aims to improve consumer experience.

> Respond to issues that arise throughout the local health network.

> Monitor the performance of the WCHN.

> Deliver services and performance standards in line with person and family entred care.

> Maintain effective communication with local, state, national and international community stakeholders

> Oversee the operations and strategic focus of consumer and community engagement.

Consumer and Community

Who do they report to?

The committee reports to the Strategic Executive Leadership, which is made up of the Executive Team from the Network and Governing Council.

How are outcomes reported and measured?

All activities and consumer feedback outcomes are reported using targeted mechanisms from the Consumer and Community Public Promotion Framework. For instance, consumer newsletter, SA Health social media and TV screens. Each year an annual consumer “year that was” is produced.

Consumer and Community Engagement is reviewed annually and reported to the CCPC for monitoring and suggestions of actions.

Youth Advisory Committee (group)What is the committee?

YAG members provide comment, ideas and research on areas relating to child and youth health. They focus on resiliency, recovery, wellbeing, wellness and health. They are the peak child and youth body for South Australia with expertise through experience as previous patients, carers, siblings or friends of patients accessing a service within the Women’s and Children’s Health Network. It is chaired by a Consumer Representative with support from the Director Consumer and Community Engagement.

A formal partnership exists to resource and support the group by The Women’s and Children’s Hospital Foundation and Hospital School.

When do they meet?

The committee meet every month to conduct quality improvement activities and every three months as part of a quarterly review and update.

Why do they meet?

YAG is committed to developing a healthy and resilient health system for children and young people designed in partnership with children and young people.

> Meet monthly to raise issues, ideas and solutions to problems that contribute to the promotion of a healthy and resilient health system for children and young people.

> Make recommendations and suggestions of ways to enhance the quality and quantity of health services, procedures, policies, programs and practices that affect children and young people in South Australia.

> Inform the hospital and health network executive, staff, clinicians and other hospital employees of the work of the committee.

> Provide a platform for children and young people to participate in democratic decision making and develop scholastic and vocational skills.

> Apply their lived experience to quality-based audits.

> Advocate and adjust organisational responses to development making to ensure children and young people are included.

> Run health promotion programs and activities to support the mission of the YAG.


YAG provides bi-monthly updates to the Consumer and Community Partnering Committee.

Kids KlubWhat is the committee?

Kids Klub provides comment, ideas and research on areas relating to child wellbeing and health. They focus on resiliency, recovery, wellbeing, wellness and health. Members from the Youth Advisory Group propose topics and questions using play-based techniques that allows for a child’s point of view on health related issues.

When do they meet?

An open group of children aged 12 years and younger gather at the Women’s and Children’s Hospital every school holidays.

Once a year a roving Kids Klub takes place on the children’s wards of the Hospital to hear directly from those patients in our care.

Why do they meet?

Kids Klub is committed to developing a healthy and resilient health system for children designed in partnership with children.

> Make recommendations and suggestions of ways to enhance the quality and quantity of health services, procedures, policies, programs and practices that affect children in South Australia.

> Provide a platform for children to participate in democratic decision-making and develop scholastic and vocational skills.

> Apply their lived experience to quality-based audits.

> Advocate and adjust organisational responses to development making to ensure children are included.

> Run health promotion programs and activities to support the mission of the YAG.

http://www.wch.sa.gov.au/support/consumer/consumer_governance.html

http://www.wch.sa.gov.au/support/consumer/documents/Kids_Klub_Poster_2.pdf




Kids Klub provides a quarterly update to the Youth Advisory Committee.

Person and Family Centred Care Steering CommitteeWhat is the committee?

Our core philosophy is person and family centred care, which means to provide a tailored, kind, compassionate, timely and comfortable experience to every consumer and carer who access services within our health network. This group activates actions and monitors a host of annual events and projects and monitors the operations of the WCHN Person and Family Centred Care Charter.

Chaired by the Executive Director Corporate Service and a consumer. Person and Family Centred Care has been adopted as the key principle driving our health care in the Network and it is this committee, that is responsible for providing this strategic focus. Made up of an executive from each Division and a staff member; they join consumers every quarter to robustly debate and organise effective Person and Family Centred Care.

Divisions within the Network such as Child and Adolescent Mental Health (CAMHS) and Oncology (Cancer) have divisional consumer groups like Cancer Voice (Oncology Unit) and ELECT (CAMHS) who report through their Divisional Directors recommendations to the Person and Family Centred Care Committee.

When do they meet?

The committee meets bi-monthly.

Why do they meet?

The committee is driven to improve better health outcomes and to ensure that all consumers and carers of our services reach their fullest health potential by receiving services that are culturally appropriate. The committee aims to;

> Raise issues, ideas and solutions to problems that contribute to the promotion of the four pillars of person and family centred care including:

– Treating consumers, carers and their families with dignity and respect

– Communicate information clearly and openly with the consumer

– Actively involve consumers in decision-making – Provide positive and kind interactions

> To assist with the development and monitoring of key performance indicators for quality service.

> To advise the organisation on strategies to enhance and promote consumer and carer customer service.

> To identify and advise the CCPC on priority areas and issues requiring consumer and community participation.

> To monitor annual events and activities including; Person and Family Centred Care Week, Person and Family Centred Care Awards and Person and Family Centred Care Passion Projects.


Provides regular updates to the Consumer and Community Partnering Committee.

Health Literacy CommitteeThe committee meet every month to conduct quality improvement activities, provide advice to the health network to ensure communication is underpinned by effective health literacy principles and embed health literacy into operational systems. The committee is made up of a mixture of WCHN staff and consumers. It is co-chaired by the Director Corporate Communications and a consumer.

When do they meet?

The committee meets monthly.

Why do they meet?

The committee is driven to improve better health outcomes and to ensure that all consumers and carers of our services reach their fullest health potential by understanding what is being communicated.

> Raise issues, ideas and solutions to problems that contribute to the promotion of a healthy and resilient health system for children, young people, women and families.

> Make recommendations and suggestions of ways to enhance the quality of health information within our services, procedures, policies, programs and practices.


> Provide a platform for health literacy principles.

> To integrate health literacy into education and staff communication practice.

> To comment on written publications for both corporate and clinical utility.

> To ensure that language and readability of WCHN communication is appropriate to children, young people and people with different cultural backgrounds.

The committee is established to ensure compliance with the Australian Commission on Safety and Quality in healthcare by:

> Embedding health literacy in WCHN systems

> Ensuring that we know why and how to communicate with consumers and carers of our service

> Have a formalized committee that provides input into content, presentation, layout, language, readability and assess publications by consumers and carers

> To oversee the integration of health literacy into staff education



Cultural Roundtable CommitteeWhat is the committee?

Our diverse population of migrants, refugees and new arrivals have a formalized space to ensure that they are responsible for developing, implementing, marketing, monitoring and evaluation WCHN health services, delivery and procedures. Chaired by the CEO of Multicultural Youth South Australia and Director Consumer and Community Engagement, the committee is a mixture of WCHN staff and consumers, carers and community members from South Australia’s multicultural communities.

When do they meet?

The committee meets bi-monthly.

Why do they meet?

The committee is driven to improve better health outcomes and to ensure that all consumers and carers of our services reach their fullest health potential by receiving services that are culturally appropriate. The group aims to;


> Make recommendations and suggestions of ways to enhance the quality of health information with our services, procedures, policies, programs and practices.


> Provide a platform for multicultural communities to influence health decision-making.

> Support the work of the Health Literacy Committee by commenting on written publications for both corporate and clinical utility.

> To run health promotion and quality improvement activities like the annual cultural diversity month.



Consumer Feedback and Improvement Committee (Citizen Jury)What is the committee?

Operating like a Health Citizen Jury, this committee provides feedback through verdicts to the CCPC, Clinical Safety and Quality Committee and Strategic Executive on quality, safe and innovative care within the organisation. This committee examines topics relating to the Network decided upon by committee members. Chaired by a consumer representative and the CEO, the citizen Jury consists of 6 current carers or consumers, Director Consumer and Community Engagement and Director Safety and Quality.

When do they meet?

The committee meets quarterly.

Why do they meet?

To empower the WCHN community to advocate for strategies, processes, procedures, policies and services that align to excellent care provision. Topics are spoken in terms of cases and WCHN staff and external stakeholders are invited as expert witnesses to support the jury to make verdicts. The committee is delegated responsibility for reviewing, theming and analysing consumer feedback on experience data and using this data to:


http://wch.sa.gov.au/support/consumer/pfcc_charter.html

http://wch.sa.gov.au/support/consumer/pfcc_charter.html

http://wch.sa.gov.au/support/consumer/pfcc_awards.html

http://wch.sa.gov.au/support/consumer/pfcc_awards.html

http://wch.sa.gov.au/support/consumer/consumer_passion_projects.html

http://wch.sa.gov.au/support/consumer/consumer_passion_projects.html



> Inform the hospital and health network executive, staff, clinicians and other hospital employees of work required to achieve excellence in care.

> Run health promotion and quality improvement activities in partnership with the organisation.



Child Adolescent Mental Health Services (CAMHS) Advisory CommitteeWhat is the committee?

Established to support and champion for robust, effective and responsive child, adolescent mental health services within South Australia. Established in 2013 and formalized into the Women’s and Children’s governance structure in December 2016, the committee known colloquially as ELECT enables consumers and carers to have an impact on the type of service they expect and need.

When do they meet?


Why do they meet?

To empower the WCHN community to advocate for strategies, processes, procedures, policies and services that align to excellence in child and adolescent mental health care. The committee seeks to involve consumers, carers, community representatives and potential consumers in decision making about mental health services, service planning, policy development and setting priorities for the division of CAMHS.

They aim to:

> Raise issues, ideas and solutions to problems that contribute to the promotion of a healthy and resilient mental health system for children, young people, women and families.





Child and Family Health Services (CaFHS) Advisory Committee What is the committee?

A vital part of South Australia’s child development system is the Child and Family Health Service. The service ensure that child have the best start in life by providing support to families in the areas of health, development and wellbeing. To assist in this vision this consumer and carer advisory group, made up of 10 representatives ensures that CaFHS has culturally responsive community-based services.

When do they meet?


Why do they meet?

To empower the WCHN community to advocate for strategies, processes, procedures, policies and services that align to excellence in child and family health care services and practice. The committee seeks to involve consumers, carers, community representatives and potential consumers in decision making about child and family healthcare planning, service planning, policy development and setting priorities for the division of CaFHS. They aim to:

> Raise issues, ideas and solutions to problems that contribute to the promotion of a healthy and resilient programs supporting the first 2000 days of life of a child.






Chapter Two Getting Started



Becoming a Consumer Representative

The process of becoming involved as a Consumer representative is straight-forward. A guide below gives the steps that would be advised.

1 Complete the WCHN consumer membership form

2 Consider Joining WCHN Basecamp

3 Attend a face-to-face 5 hour orientation session. Complete on line training module “Partnering with consumers and the community”

4 If you have applied to be on a committee or working group you will need to:

Complete a DSCI clearance by providing your full name, date of birth and email.

Develop a professional learning plan

Have access to the Employee Assistance Program for confidential counselling

Be provided with a low-level security ID Badge

5 You are now ready to go. All of our new vacancies are sent out in the monthly consumer e-zine and available on the WCH website under Consumer Vacancies.

Role descriptionsEvery consumer activity or job has a tailored role description that defines the function, skills and competencies that are required. It provides the basis for a contract between you and the WCHN. It is a valuable performance management tool and provides Consumer Representatives with clear understanding tasks.

What are some of the Consumer Representatives roles?

Roles Description

Researcher As a member of on a WCHN Committee in or outside the Consumer Governance Structure a consumer can act as a researcher. Committees can only inform and perform limited consultation. It is the role of the Consumer Representative to identify when wider consultation with the community must take place. It may be the note of the consumer on the committee to conduct the research or to work in partnership with staff to conduct the research.

Consumer Representatives have access to both digital and physical engagement boards. These boards allow you to submit questions to canvass the thoughts of the community.

Consumers on the WCHN database will often communicate or meet with groups in their community to provide feedback on clinical information and some design.

Advocate Our consumers play an important role within the Consumer Governance Structure to be a sounding board for important health and related issues.

Surveyor Consumers involved actively are in designing and implementing written and online surveys.

Project coordinator

Quality improvement activities are encouraged to be delegated to our consumers and they are reimbursed for expenses to manage projects.

Editor The WCHN Consumer newsletter features articles including “Top 10 Lists” written by our consumers. Consumers can also submit other pieces of writing for publishing.

Listening Post member

The WCHN has adopted the Listening Post mechanism which are short, intensive interviews using an electronic tablet to gather feedback which support a peer-to-peer method, is adopted to quickly establish a rapport.

Consultant On committees or special project panels: consumers use their lived experience and connections within the community to help solve problems.

Crowdsourcer Consumers are members of a WCHN 24.7 online consultation and networking space to provide feedback on issues, input into publication design and network with other consumers.

Co-Leader or Leader

When a consumer is required to design projects, translate research, implement activities and/or evaluate initiatives with a sense of autonomy.

Being an involved consumer representative in the Woman’s

and children’s health network, you can expect to be a part of a highly-respected team of dedicated people that provide important feedback to staff as well as executive management about the services that others receive at the hospital. You will be expected to communicate in an open and friendly manner and build valuable rapport with consumers from all walks of life.

Our feedback that we collect will be used to create a health service that is responsive to consumer input and needs. Do not panic if you are not completely sure of all services at the hospital, in conjunction with the many training opportunities that are available as part of the Consumer engagement strategy, you will also have the full support of our Director of Community Engagement. In collaboration with the support of the Director you will also have access to our online network Basecamp. Here you can have input into new updates to the network, as well as opportunities to join one of our many Consumer participated councils in the Woman’s and Children’s Health Network.”

Tara Consumer Representative

Why should I be involved and what are the benefits?

There are many reasons as to why you might want to be included within the Network’s consumer community. As a Consumer Representative, at whatever level you may wish to become involved, you will be in the unique and important position to influence change. Change which could affect the efficacy and quality of the services which the consumers use.

There are other positive aspects to being a Consumer Representative. You will be given the opportunity to learn skills in meeting organisation, report interpretation and networking. It also allows you to operate in an environment with many other like-minded and dedicated people working towards the same goals.



Lived experience

Lived Experience refers to the subjective understanding a person who has either been a consumer of a health service or a carer/family member of the consumer. Specifically, if refers to the experiences of their health and the service they received. This information is very useful in a consumer engagement process as this can be drawn upon in participatory discussions. Note however that sometimes in more formal settings, as a consumer you may be asked to consider issues in a broader sense beyond your own individual experience, although that still remains important.

Consumers as researchersIf you want to be a Consumer Representative on a WCHN committee or working group, you acknowledge that part of your role is to be a community researcher. Committees are their very best are to inform and consult. In order to strengthen community voice into decision-making: your role is to ensure that processes are in place to inject a wider community sentiment into recommendations, verdicts or decisions. To do this the Consumer and Community Engagement Unit provides you with the following tools:

> Basecamp. Use the Consumer Representative Space to engage other members.

> Digitial Display Boards. You can ask the Director Consumer and Community Engagement for a Display Board that can be used in public participation activities to ask a critical question and gather feedback.

> Survey Monkey is used to canvass the community on an issue, with links available to be shared widely.

> Networking events. Attend the WCHN community networking events which happen twice a year.

Making the most of my consumer, carer and community representation

What questions can I ask in meetings, co-design activities or workshops that would have impact? In meetings, quality improvement activities or workshops you are wanting to create sustainable changes that have positive impact. We encourage you to use an appreciative inquiry approach; which values the recognition of the best in people, places, solutions and systems. Appreciative inquiry is done best, when you look at the strengths, successes and positive potentials during your exploration, discovery and analysis stages. During any meeting or project work your role is to help the organization:

1. Clearly define what the focus and goals should be, based on what will make the most impact for the consumer and their family. Help to define the methods used.

2. Appreciate the things that are already working well and help imagine what could be.

3. Use data themes and numbers to determine what should be done.

4. Identify any gaps in knowledge and plan to do some research. You have an entire toolbox available to you including; Basecamp, software to create questionnaires, approaching community groups, accessing the WCHN consumer governance meetings, hosting a focus group or listening post. The Director Consumer and Community Engagement can help out.

5. Translate feedback into practice, projects and recommendations. Ensure that there is a focus on how these will enhance what is already strong, is is embedded and how it aligns with the original goals.

6. Report the outcomes using the WCHN Public Promotion Framework which includes tools like the WCHN Consumer Newsletter, Electronic Billboards, Safety and Quality boards etc.

7. Assess the positive impact that has been created.

Define what is the topic of inquiry.

Appreciate what is already working and identify the assets that can help move

towards an outcome.

Conducting research, listening posts, consultations or

focus groups

Analysing data themes, numbers and consumer

feedback.

Translating feedback into practice, projects or recommendations

Evaluation

Report Outcomes

WCHN Consumer Engagement

Appreciative Inquiry cycle

Consumers influence and have an impact on new projects, processes and initiatives. For most WCHN projects the Appreciative Inquiry cycle is adapted.



One of the most powerful things that you can do to apply an appreciative inquiry approach, is to ask the right questions.

These questions are used as a guide when you are in a meeting or involved in a quality improvement conversation.

Appreciative Inquiry cycle

BRAINSTORMING

Lets start with what is already working well, can we look at that?______________________________________________

What is our data telling us ?__________________________________________________________________________________

Can you describe the consumer and/or community engagement history in this committee or project?__________________________________________________________________________

What difference can I as a consumer Representative making in planning and improving this topic of inquiry? ______________________________________________________________

Where is this issue happening? _______________________________________________________________________________

What is our goal going to be? ________________________________________________________________________________

How do we know that we are achieving outcomes set out by our goal? __________________________________________

What difficulties would we encounter? _______________________________________________________________________

What is the vision and how clear is it for everyone? ___________________________________________________________

What is the leadership capability to drive this initiative forward? _______________________________________________

What would be different if this working well? _________________________________________________________________

How else can we look at this topic? ___________________________________________________________________________

PERSON AND FAMILY CENTRED CARE

How long will it take to achieve the goal and what is going to be necessary to get it right? _______________________

How are we going to focus on satisfaction “person and family centred care”? ___________________________________

What is missing and how can we enhance shared decision-making? _____________________________________________

Where does shared decision making fit here? __________________________________________________________________

IMPLEMENTATION

What are the safety messages that we need to focus on to ensure that everyone can understand this new process? _____________________________________________________

Can we do a cause and effect map to understand this issue? ____________________________________________________

Who is going to be involved and what is the role of the consumer representative? ___________________________________________________________________________

How are we going to communicate the changes to all stakeholders? _____________________________________________

What is the back up plan if this does not work? _________________________________________________________________

What is my role as a researcher for this committee? _____________________________________________________________

If we take this course of action, what we will see that ensures us that the change has been positive?__________________________________________________________

YOUR OWN QUESTIONS

______________________________________________________________________________________________________________

______________________________________________________________________________________________________________

______________________________________________________________________________________________________________

______________________________________________________________________________________________________________

______________________________________________________________________________________________________________

The moment we ask a question,

we begin to create a change.

Take

this with

you and add

your own

questions.

Making the most of my consumer, carer and community representation

What questions can I ask in meetings, co-design activities or workshops that would have impact? In meetings, quality improvement activities or workshops you are wanting to create sustainable changes that have positive impact. We encourage you to use an appreciative inquiry approach; which values the recognition of the best in people, places, solutions and systems. Appreciative inquiry is done best, when you look at the strengths, successes and positive potentials during your exploration, discovery and analysis stages. During any meeting or project work your role is to help the organization:

1. Clearly define what the focus and goals should be, based on what will make the most impact for the consumer and their family. Help to define the methods used.

2. Appreciate the things that are already working well and help imagine what could be.

3. Use data themes and numbers to determine what should be done.

4. Identify any gaps in knowledge and plan to do some research. You have an entire toolbox available to you including; Basecamp, software to create questionnaires, approaching community groups, accessing the WCHN consumer governance meetings, hosting a focus group or listening post. The Director Consumer and Community Engagement can help out.

5. Translate feedback into practice, projects and recommendations. Ensure that there is a focus on how these will enhance what is already strong, is is embedded and how it aligns with the original goals.

6. Report the outcomes using the WCHN Public Promotion Framework which includes tools like the WCHN Consumer Newsletter, Electronic Billboards, Safety and Quality boards etc.

7. Assess the positive impact that has been created.

Appreciative Inquiry cycle on page 31


Chapter Two Getting StartedChapter Two Getting Started

Case study: Dog Comfort Stop

DecidingEarly 2016 a number of suggestions were made through the WCHN online suggestion box to create a focused respite environment for assistant dogs. The Consumer and Community Partnering Council saw a number of stories written by young people, and recommended action.

Co-DesigningConsumer Representatives met with industry stakeholders to design a project plan of what would be required. This plan needed to include consumer and stakeholder input. Part of the co-design included a communication plan to inform consumers as inpatients about the Dog Comfort Stop.

ResearchingConsumers were tasked to engage WCHN staff, industry stakeholders like Guides Dog Australia and consumers to understand what is required in the ideal environment. Consultation included direct interviews, an online survey and environment walk arounds.

AnalysisThe Consumer and Community Partnering Council were presented with a plan that included a number of options of potential locations.

TranslationTo take the plan from paper to real-life required our Consumers the Youth Advisory Group gathering community support from Industry partners like Bunnings to help with build. A working bee was ordered where Consumer Representatives met with Industry partners to build the Dog Comfort Stop.

Report OutcomesSocial media, internal publications and the consumer newsletter were selected to promote this outcome.

EvaluationConsumer Representatives designed a three question survey for users of the Dog Comfort Stop to access.

What we will see if consumers, carers and the community are involved?

In 2015, the organization commissioned Dr. Anne Johnson to conduct a literature review of commonly held markers of successful health consumer engagement. The organisation annually evaultes the approach to participatory processes of engagement by testing the following:

1. There is measurable impact and action. Engagement processes provide outcomes that improve the consumer and carer experience.

2. There is sustained engagement and participatory culture. Engagement is seen as both a process and an outcome, with ongoing quality consumer engagement occurring month after month.

3. There are transparent and trustworthy exchanges back to the community. The community knows what happens to their feedback. Outcomes are clearly and openly provided back to the community in a range of ways.

4. Shared purpose is established. Through co-designing the language of “we” and “together” is strong.

5. The value and validity of consumer and carer participation is clear and reflected in all frameworks, procedures, state-wide policies and organizational structure.

6. There are clear goals identified that frames consumer and carer participation across the organization.

7. Topics that are discussed with consumers, carers and the community have appropriately been sourced and different strategies fro different people have been implemented. We are respecting developmental milestones, culture and literacy levels when planning engagement.

8. The information we provided to our community is written in a way that can be understood. There is limited jargon and acronyms are fully explained in written materials.

9. Technology has been enabled to maximize engagement.

10. There are measures in place to assess the effectiveness of consumer and carer participation.

When planning consumer, carer and community engagement in the health network what do staff consider?

There is no one single approach to consumer, carer and community engagement but there are some general rules of engagement. Staff and Consumer Representatives have access to three tools to ensure that ethical and meaningful engagement unfolds. These three tools act as a guide to all forms of public participation that involves consumers and the community and are all underpinned by the WCHN Consumer and Community Engagement procedure.

TOOL ONE: Checklist for engaging consumers and carers. This four page planning form explores the stages of public participation including a section on preparation and planning, goal setting, detailed time line, feedback methodology, risk rating, ethical considerations and sign off. If the purpose of the consumer, carer or community engagement is to evaluate health outcomes, health status, case-note review or if sensitive questions relating to patient health will be asked; a submission to the Research Ethics Committee may be required. You are to liaise with the Research Secretariat. Call 8161 7703.

TOOL TWO: Consumer and Community Engagement Evaluation Report. A single page cover form to be attached with any evaluation data (questionnaire feedback etc.) that captures both numbers and narrative on what occurred.

TOOL THREE: Consumer and Community Engagement Report Template. A four page template to frame reports relating to public participation and includes a section to provide a summary for inclusion in an upcoming WCHN Consumer and Community Engagement newsletter.

Consumer Orientation Booklet page 37page 36 page 37


WCHN Consumer Representative Code of Conduct, Agreement and Confidentiality

To ensure that we can operate within a safe and efficient environment, there is a code of conduct Consumer Representatives must abide by. It centres around integrity, respect and accountability (see useful links). There is a Consumer Representative Agreement that aligns with the Code of Conduct. As many Consumer Representatives, will work across a continuum of practice and be partners in diverse teams, it is important to be consistent with the attitudes, values and behaviours you evoke. Both documents assist in making the role of being a Consumer Representative a valued, meaningful and positive experience.

Being involved also means that you may hear people’s stories and experiences, which can be very enlightening and helps put feedback into perspective. But that also means that people’s privacy must be respected and if you do participate in such meetings you will be asked to sign a confidentiality agreement.

Many of you will also be connected to formal and informal networks like play groups, school clubs, other health consumer boards or councils or not for profits. It is your role and responsibility to make any conflict of interests known.

The Network is a White Ribbon accredited organisational and operates with a zero-tolerance approach to violence against women.

What is a conflict of interest?

A conflict of interest occurs when actions or decisions that are influenced by, or perceived to be influenced by, personal considerations reflect badly on the WCHN and relationships within the organisation, raising ethical and legal issues. Types of interest which might give rise to a situation of conflict include:

> A direct or indirect financial interest.

> An affiliation with another employer or association that is representing or may benefit from a decision.

> A non-pecuniary interest such as a family relationship or personal relationship.

Reimbursement and other policies

If your attending a formal consultation, group or committee, we see the skills and contributions brought by consumers as valuable and as such there is reimbursement for the time spent in these activities. Some areas of involvement however are seen as voluntary. If the engagement you’re involved with is eligible for reimbursement, a series of forms will be handed to you to fill out by the appropriate staff member.

To be reimbursed you will need to complete a SA Health new vendor form. Each engagement activity you will need to and complete two tax invoice forms which will be provided to you by the chair or executive support.

It is your responsibility to accurately reflect the time spent at meetings and preparing for tasks. This preparation time must be discussed prior to claiming planned time. You will be required to submit your paperwork to Shared Services via email or post.

You will be reimbursed for all activities and engagement tasks unless otherwise stated. We will make this clear to you. Most Grand Rounds are not reimbursed.

Sitting fees are remunerated at $30 per hour for those people aged 18 years and above and $20 per hour for those people aged 13 - 17 years.

If you get stuck, we are here to help. Speak with the Director Consumer and Community Engagement. For further information on the SA Health Sitting Fee Policy for non-employees please contact the Director Consumer and Community Engagement.

Online Engagement TipYou can switch off the daily notifications and configure your email inbox to prevent daily notifications appearing in your recent mail.

I have been using Basecamp to access latest literature from the UK,

US and Australia, which is posted by Allan. The information has been useful to shape opinions for the committee that I sit on.

Basecamp is a space that is accessible when I can be accessible, with a Father of two children less than two business hours are different. Basecamp allows me to keep engaged, informed and to have my voice heard on patient information. It is a great space.

Mark Consumer Representative

What is the WCHN online consultation hub?The WCHN provides access to the community to a 24/7 consultation hub. Invite occurs through an email. No matter a person’s role or title: WCHN staff and consumer representatives gather in the virtual hub to working towards common goals. It provides the community with a central and accessible online space to manage WCHN projects and communicate widely. It reduces the amount of emails, increases idea general and allows growth, without the typical growing pains.

The hub is split into multiple project spaces. Four project spaces available to all members include:

E-Journal Club A space to read articles, current literature and academic evidence about health consumer engagement. A document is added monthly.

Consumer Representative Space An open space where random thoughts, questions and project updates are shared.

Direct Consumer and Community Consultations

A space where a document with a series of questions or a issue is raised, requiring multiple minds to provide input into the solutions.

Person and family centred care network

A space dedicated to advancing the four pillars of person and family centred care.

Signing up

Signing up to Basecamp is easy

Step 1Read the Code of Conduct for WCHN Online Consultation Hub.

Step 2

Email the Director Consumer and Community Engagement your interest by writing “sign me up to Basecamp”

Step 3 Open email link sent by the Director.

Step 4Create a Basecamp profile and avatar.

Step 5Introduce yourself in the Consumer Representative Project space.



What is the Consumer newsletter?

The Consumer newsletter is an 8–12 page monthly newsletter for WCHN Consumer Representatives, stakeholders and WCHN staff members. During February – November the newsletter is produced and aims to provide:

> wrap up of activities that have occurred in the past thirty days

> build capacity of consumers and WCHN staff

> details of upcoming events, activities and training.

In April and December of each year two annual evaluation documents are produced:

1. WCHN Consumer and Community Safety and Quality Performance Report (April).

2. WCHN year in review document (December).

What can I do to further my role?

The skills that you can develop as a Consumer Representative will help you considerably. A short list of some of the possibilities include:

> Consumer training opportunities through the Consumer Newsletter and Register.

> Attend grand rounds

> Attend conferences including a series of webinars and teleconferences provided through Women’s Healthcare Australasia and Children’s Healthcare Australasia.

> Attending training sessions held by the Health Consumer’s Alliance of South Australia.

> Consumer Orientation Sessions.

> Support from the Consumer Engagement Unit.

> Conference attendance and speaking opportunities.

What is the Consumer and Community Engagement Procedure?

A procedure to support staff to provide a safe, consistent and contemporary approach to Consumer and Community Engagement. Ask the Director Consumer and Community Engagement for your copy.

What have been some of the positive outcomes from involving consumers, carers and the community?

The Director Consumer and Community Engagement manages the WCHN Consumer Quality Improvement Register. Between 2016 - 2018, 212 projects involving consumers, carers or the community were registered.

On pages 39 - 42 are a few of the positive stories.

CHILD AND FAMILY HEALTH SERVICES (CAFHS) RIVERLAND TEAM

What was the project?

To introduce a new therapeutic program for mothers and fathers who access the Riverland Child and Family Health Services team. The innovative program is aimed to enhance Early Parenting Classes, set-up excellent support for new parents and promote good mental health.

What change occurred?

The tools from the WWWT program were integrated into the existing Early Parent Group and were beneficial in creating discussions in the group that would not have normally occurred at such deep and rich levels. The consumers need for information regarding support services when they went home from hospital with their new baby was addressed through the development of a fridge magnet; an unexpected outcome from the project funding. The magnet was produced in partnership with consumers and provides essential contact numbers for services and websites, such as Child and Family Health, Mental Health Emergency, Australian Breastfeeding Association and Parent Helpline.

What was the impact?

Overall the pilot program supported eight Riverland families to access an innovative program. There was strong consumer involvement, with presentation of the program at Antenatal classes and use of audits to seek consumer feedback for design and implementation of the program. A total of 28 completed questionnaires were received, which guided the program structure.

What elements of the project worked well?

The consumers and caregivers had a voice in what they wanted from our service. This was very successful as clients were keen to engage with completion of the audits and attendance at our pilot group. Purchased resources for use in the group were also well received including Glider Rockers, Safe Sleep DVD, magnets, dolls and wraps.

Working in partnership with consumers and the community

Within CaFHS we aim to work in partnership with our clients, so it was important for this program to incorporate those principles of consumer engagement. Consumers enthusiastically completed the questionnaires and were excited about what the program had to offer. The tools from the WWWT program were useful in the group, but can also be utilised with couples or with one person. The WWWT phone app was also promoted for clients to access the information as they needed it. The program, as indicated by consumers, would benefit from being a total of four weeks in duration, providing parents a support group they can then follow on in the community with the social network they have gained from attending the classes.

What Were We Thinking (WWWT) therapeutic trial by Jodie Binder and Annette Sargent1

Consumers involved in co-design30

Consumers involved in implementation process30

Target group New parents and their babies

Passion Projects

https://women.wcha.asn.au

https://women.wcha.asn.au

https://children.wcha.asn.au


METROPOLITAN PERSON AND FAMILY CENTRED CARE PASSION PROJECT


“Women carry their babies for nine months, but they carry their birth stories for life” - Tessa Kowaliw.

Birthing Stories is an initiative created by Tessa Kowaliw, a consumer, writer speaker and educator, in collaboration with Heather Frahn, a sound therapist, music artist, vocalist and meditation guide. This project is deeply rooted in the consumer experience; it comprises Tessa’s extensive knowledge of maternity services and years of experience of working with birthing women and their families. Every new parent has a profound story which they take away with them at point of discharge, and Birthing Stories is designed to capture stories in new and engaging ways so that they can be heard many times, by many people.

Birthing stories captures the rich diversity of women’s stories through a range of creative methods including written, visual and audio. The workshops were designed to be dynamic and fun.


Birthing Stories was launched on 9 August 2017 and celebrated the achievements of this Passion Project, including:

> ‘Born With You’, a song for relaxation (available in full and as radio and relaxation edits)

> The ‘Birthing Stories Vox Pop’, a 20 minute radio documentary

> The collection of Birthing Stories artwork

> The Birthing Stories CD, cover art and song lyrics

> The Birthing Stories group poem

> An animated video installation.

‘Born With You’ is available online at https://www.youtube.com/watch?v=NxQxHrdQIC4 and the Birthing Stories vox pop can be accessed at https://www.youtube.com/watch?v=kgB6ajcw-tU&t=139s.

The launch event attracted diverse attendees, including consumers, healthcare providers, WCHN Executive, researchers, Arts in Health leaders and others with an interest in maternity services. Excerpts from the song and vox pop were shared, and audience members had a chance to participate in a Q&A session with project leads and participants. Heather Dunnachie spoke about the future of Birthing Stories as a resource for the Centre for Education and Training, and project participants received copies of the Birthing Stories CD as a thank you for their time and insights.

The stories are now used in antenatal care planning and healthcare provision.


It was clear that participants benefited directly from their involvement in this project. This project offered women a precious opportunity to step out of daily life and explore the meaning of their birth experience to themselves as mothers and also as individuals. The two workshops, a full day session followed by a subsequent half-day consolidation circle, were opportunities for these women to explore their varied experiences of birth within a supportive, non-judgemental group of peers coordinated by experienced, non-clinical facilitators. The non-clinical nature of the process meant that participants discovered for themselves a new language for discussing birth - one which is quite different to more typical clinical recounts which are shared in other unstructured settings.

Centre of Education, Women’s and Babies Division, and Community Engagement Division Birthing Stories by Tessa Kowaliw (consumer), Heather Fran (community member) and Heather Dunnachie.

2Consumers involved in co-design2


Target group New parents and their babies

Passion Projects CHILD AND ADOLESCENT MENTAL HEALTH SERVICES


To purchase tablets to support young people to virtually complete Strength and Difficulties Questionnaires (SDQ). This is used as a routine measure to screen for emotional and behavioural disorders in children and adolescents referred to a community Child and Adolescent Mental Health Service (CAMHS).


Consumer feedback is there is better access to completing the SDQ and there has been an increase in the uptake of young people, particularly from vulnerable groups completing the SDQ forms. One of the most significant features of tablet technology is its ability to be portable and taken into interview rooms, and filled out in session with clinician support. Prior to this, hard copy paper forms were difficult to fill out.


The impact has been the uptake of young consumers willing to complete the surveys using the tablet technology. The table device is also responsive to children and young people, by respecting their skills as digital natives. Having an electronic SDQ means a reduction in printed materials and costs, better flexibility to collect SDQ data and an increase in mobility. In addition, the tablets provide other relevant apps, like mindfulness apps for children and young people whilst they wait. The impact of the introduction of this technology is expected to have positive outcome in 2018


Co-designing the project with consumers and working together as a project team provided an opportunity for staff and consumers to solve a simple but large issue faced by children and young people who access the service.


In order to meet the needs of those affected by mental health problems, we must have a comprehensive, balanced and forward looking framework which CAMHS has with the consumer and carer advisory group ELECT. It is wonderful to have passionate and empathetic carers willing to work in partnership at a governance and service improvement level. When you provide easier access to quality improvements such as our SDQ trial, not only do you build upon existing relationships with the consumers but you also create positive social impact.

Electronic SDQ Trial by Lee Marling and Leanne Galpin (consumer)3Consumers involved in co-design2


Target group Children and young people 6-17 y.o

Passion Projects

https://www.youtube.com/watch?v=NxQxHrdQIC4

https://www.youtube.com/watch?v=NxQxHrdQIC4

https://www.youtube.com/watch?v=kgB6ajcw-tU&t=139s.

https://www.youtube.com/watch?v=kgB6ajcw-tU&t=139s.

SURGICAL SERVICES DIVISON


To collaborate with children and teenagers to design an elective surgery welcome video that respected a preferred method of communication. Children and their families attending WCH for surgery will benefit from this project. WCH completes approximately 10,000 operations on children each year. It is anticipated that children and their families booked for elective surgery and emergency surgeries will have the videos available to them on the WCH website. A team from Surgical Services worked with the Youth Advisory Group (YAG) to consult 115 children, inviting them to comment on how elective surgery information should be communicated and what would children pay attention to. During the script writing, the YAG was involved in co-designing the drafts and filming involved three children from Kids Klub. The final product is two, age appropriate videos that are now available for children accessing the WCH for elective surgery.


Changes that have occurred include a better understanding of what happens in a surgical procedure, self-reports of a reduction in the anxiety relating to coming in for elective surgery (evidenced through letterbox feedback) and greater staff empathy with children by understanding what reduces pre-surgery anxiety.


The impact was immediate with the video being viewed by over 100 children in the first month. The project has motivated the clinical team to consider other resources that could be developed to support consumers. It is expected that 10,000 children will view the online videos by September 2018.


Co-designing the project with consumer and working as a team were key features of the project. The project supported staff to develop a resource that was lacking. The funds supported the payment for filming and consumer participation.


A multiple layered approach to consumer engagement occurred. Contact with our consumers was both positive and rewarding. The families that were filmed were very flexible, motivated, genuine and skilled. The YAG were clear advocates and knowledgeable, and were able to provide excellent information and feedback. The Youth Symposium provided excellent information, enthusiasm and a reminder of why we were focused on developing the resource.

Welcome to Surgery video for children and young people by Cate Slape and Bettina Anderson4

Consumers involved in co-design115


Target group Children 0-18 y.o booked for elective surgery

Passion Projects


Chapter Three WCHN Tools of Engagement



WCHN tools of engagement

WCHN has developed a range of tools for Consumer Representatives and WCHN staff to access including:

Tool Description

Consumer Lounge A lounge and meeting area with lockers, fridge, wet area and tea / coffee facilities for Consumer Representatives. Located in Zone E, Ground Floor of the Women’s and Children’s Hospital campus.

Consumer Training Calendar

An annual training calendar developed by Consumers for Consumers (see links).

Consumer Reimbursement

All consumers who sit on a WCHN committee, participate in a quality improvement activity, sit on a selection panel, train staff, conduct an audit, survey the community or operate as a WCHN Consumer Representative will be considered for reimbursement.

Director Consumer and Community Engagement

The Network employers a Full Term and Ongoing Director to oversee the Consumer and Community Engagement Unit.

Consumer Governance Matrix

A snapshot of the Consumer Governance Structure and what agenda items would be considered by members of the committees.

Community Engagement Board

5 x A2 Notice Boards that can be hired by Consumer Representatives to lead consultations.

Community Engagement Digital Board

A digital engagement board using Survey Monkey software managed by the Director Consumer and Community Engagement. Consumer Representatives can request that a time-limited survey be constructed and sent out for public comment.

Basecamp A 24.7 Crowdsourcing virtual consultation space.

Internal Wiki An internal space for WCHN staff and WCHN registered Consumer Representatives to access information and materials including internal procedures pertinent to their role.

External Wiki Based on the Women’s and Children’s Hospital Website a series of factsheets, information, videos and other material to promote and support WCHN Consumer Engagement.

WCHN Consumer and Community Engagement Polices and Procedures

To provide consistent, responsible and meaningful engagement a number of frameworks have been developed. The following list of documents can be requested from the Director of Consumer and Community Engagement.

Policies and Procedures

Consumer Participation on WCHN Committees, Working Groups and Advisory Groups procedure

A procedure which outlines the processes for including Consumer Representatives, managing recruitment and selection of consumers, conflict resolution, principles of engagement and participatory supports.

WCHN public promotion framework

Detailing how the wider community access information on safety and quality performance.

WCHN Partnering with consumer educational framework

Provides evidence and tools for staff to involve Consumer Representatives in building capacity of other staff.

WCHN consumer feedback on experience framework

A comprehensive explanation of how consumer feedback on experience also known as “Patient Reported Outcome Measurements (PROMS)” are collected, analysed and implemented.

WCHN Multidimensional Framework for consumer engagement

An overview of how the WCHN partners with consumers at the ward/service level right through the organisation and the evidence-based methodology that supports the method.

Partnering with Carers Policy Directive

As a way of improving the way we partner with carers through the Carers Recognition Act 2015 this policy directive recognises the roles and rights of carers in the Women’s and Children’s Health Network.

Charter of Health and Community Services Rights Policy Directive

The purpose of this policy is for the appropriate prosecution and implementation of the Charter of Health and Community Services Rights. The policy aims to increase awareness of all WCHN staff and consumers about healthcare rights.

Consumer and Community Advisory Committee / Group Policy Guideline and Toolkit

The purpose of this document is to support the Consumer Representatives and staff on the Consumer and Community Partnering Council. The accompanying tool assists authentic partnerships to unfold.

A Framework for Active Partnership with Consumers and the Community Policy

This policy ensures that are mechanisms within the WCHN consistent with SA Health for appropriate engagement with consumers and the community.

Guide for Engaging with Consumers and the Community

A toolkit aligned with the “A Framework for Active Partnership with Consumers and the Community Policy”.

http://www.sahealth.sa.gov.au/wps/wcm/connect/2e4c738043872fff967ad7bc736a4e18/Directive_Sitting+Fees+and+Reimbursement+for+External+Individuals_Jan2015.pdf?MOD=AJPERES&CACHEID=2e4c738043872fff967ad7bc736a4e18





http://www.sahealth.sa.gov.au/wps/wcm/connect/064a90804a2136c38110e190d529bdaa/Directive_Partnering+with+Carers+Policy+Directive_110915.pdf?MOD=AJPERES&CACHEID=064a90804a2136c38110e190d529bdaa

http://www.sahealth.sa.gov.au/wps/wcm/connect/064a90804a2136c38110e190d529bdaa/Directive_Partnering+with+Carers+Policy+Directive_110915.pdf?MOD=AJPERES&CACHEID=064a90804a2136c38110e190d529bdaa

http://www.sahealth.sa.gov.au/wps/wcm/connect/abb96d004be9063c9691970719f20a00/Directive_Charter+of+Health+and+Community+Services+Rights+Policy+v2_Oct2015.pdf?MOD=AJPERES&CACHEID=abb96d004be9063c9691970719f20a00



http://www.sahealth.sa.gov.au/wps/wcm/connect/1dd52e804a1dc1b0bb0dfb90d529bdaa/Guideline_Consumer+and+Community+Advisory+Committee+Policy+Guideline+and+Toolkit.pdf?MOD=AJPERES&CACHEID=1dd52e804a1dc1b0bb0dfb90d529bdaa





http://www.sahealth.sa.gov.au/wps/wcm/connect/59bbc2804e45470da9e9af8ba24f3db9/Directive+-+Framework+for+Active+Partnership+with+Consumers+%26+Community+-+Feb2017.pdf?MOD=AJPERES&CACHEID=59bbc2804e45470da9e9af8ba24f3db9




http://www.sahealth.sa.gov.au/wps/wcm/connect/f8d1d0004e454788aa0caf8ba24f3db9/Guideline+-+Guide+for+Engaging+with+Consumers+%26+Community+-+Feb+2017.pdf?MOD=AJPERES&CACHEID=f8d1d0004e454788aa0caf8ba24f3db9





Consumer voice

The Network partners with many people that reflect the rich diversity of the population that is served. Children, young people, Mothers, Family members, Aboriginal community and those newly arrived as migrants to Australia: are critical in influencing our decisions. There are a range of developmentally appropriate mechanisms built into the system to hear what consumers need staff to hear. Mechanisms include:

> Letterboxes across wards and services.

> Digital Letterbox available on the Women’s and Children’s Hospital website.

> Divisional Listening Posts.

> Fairy Face Painter and Balloon Dude feedback sessions.

> Engagement Boards.

> Consumer Coffee Club and Roving Consumer Coffee Club.

> Consumer Governance Structure.

> Great wall of gratitude boards in wards and services.

> A formal complaints and compliments system.

> Volunteer surveyors.

Our mechanisms and how they support data gathering can be found on pages 50 - 51.

Evaluation: How do we know a difference is being made?

Health Services and Government Authorities in Australia now recognise the importance in consumer engagement, and by virtue of that fact, the National Safety and Quality Commission has made consumer engagement part of the National Safety and Quality Standards – an important guideline health services are assessed by.

WCHN evaluation

All activities, projects, reviews, quality improvements, research and committee work co-designed with consumers or for consumers will be evaluated. The purpose of the evaluation is to get an understanding of the effectiveness of the participation activities, the impact of the improvement and at times to review the performance of staff and consumers involved in the process. The basic tenants of WCHN research are; what were the strengths, what did not work so well, what opportunities are there for growth and what could be done next time. The Consumer and Community Engagement Unit has designed a evaluation matrix and checklist for WCHN staff and consumers.

Barriers to Consumer and Community Engagement

The Women’s and Children’s Health Network vision is to provide the most contemporary co-design model of health consumer engagement in the world. During any process of engagement there will be barriers which can be categorised into the following:

> Poor understanding of consumer and community engagement principles and approaches

> Time and effort

> Funding

> Personal barriers

> Clinical workloads

> Group Dynamics

> Poor planning

> Difference in expectations

Consumer reported outcome measurements and feedback makes a difference to organisational design and governance

It is strongly argued that consumers and community have a role to play in shaping the strategic direction, operational planning and organisational processes in health services.

There is strong evidence showing that the involvement of consumers in planning, delivery, monitoring and evaluation can make a positive impact in these areas, as well as on the attitudes of health professionals and managers.

There is evidence that demonstrates that consumer and community engagement has contributed to changes in the provision of health services.

Through involvement in planning and development, and shows how consumers and community members can effectively contribute to decision making to shape the strategic direction, operational planning and organisational processes of health services through various methods.

Consumers as partners in the WCHN help the organisation both capture and understand the consumer perspectives about how illness, care delivery and processes impacts on their health and well-being.

The network has many clinical tools and access to world-class clinicians to ensure care is standardized and validated. When married with the consumer voice, the Network can truly appreciate experience and perception, providing a holistic gauge for local service improvement.

As a Consumer Representative, you are responsible to work with the Director Consumer and community engagement and key contact person for any activity to address any barriers. Barriers may be there for good reasons and often can be easily resolved by identifying and addressing these barriers early.

Being a consumer rep allows you to have your say on specific things within the network, you are able

to make some changes that will benefit consumers who visit the hospital either from being on a committee or being involved in online consultations. There really are lots of different ways to be involved depending on how much time you would like to put in. I am very involved now after leaving my other job to take on a more active role with the network. Since being involved I have had the opportunity to present at The Mental Health Services Conference in New Zealand, highlighting CAMHS collaboration with consumers in service design, planning and implementation. Over the past year and a half, I have really noticed a difference in how consumer reps are received by staff and this is something that is really making a difference throughout the hospital and community sites. So if you are interested in making a difference get in touch with The Director Consumer and Community Engagement and get on board at The Women’s and Children’s Health Network.

Tanya Consumer Representative


Consumer Feedback on Experience Model

Consumer Feeback on experience

All collected in one central

space

Consumer Communites

Translated into quality

improvements

Outcomes reported

Consumer newsletter

Annual reports

Social media

TV screens

Divisional Safety and

Quality Groups

Translated into quality

improvements

Outcomes reported

Notice boards in local wards and services

Downloaded

&

Reviewing Reporting

Tell Us What You Think

Consumer and Volunteer

Surveying

Age-appropriate methods like face-

painting, peer-groups, gamification etc.

Consumer Coffee Club and Roving Consumer

Coffee Club

24.7 Letterbox SystemTechnology-enabled tools like e-kiosks,

tablet devices, software like Fabio the Frog© and

Quick Tap©

WCHN Family Huddles

24.7 Link on the Women’s and Children’s

Hospital website



Item Action

Clinical governance and quality improvement systems to support partnering with consumer

Integrating clinical governance 2.1 Clinicians use the safety and quality systems from the Clinical Governance Standard when:

a. Implementing policies and procedures for partnering with consumers.

b. Managing risks associated with partnering with consumers.

c. Identifying training requirements for partnering with consumers.

Applying quality improvement systems 2.2 The health service organisation applies the quality improvement system from the Clinical Governance Standard when:

a. Monitoring processes for partnering with consumers.

b. Implementing strategies to improve processes for partnering with consumers.

c. Reporting on partnering with consumers.

Partnering with patients in their own care

Healthcare rights and informed consent 2.3 The health service organisation uses a charter of rights that is:

a. Consistent with the Australian Charter of Healthcare Rights.

b. Easily accessible for patients, carers, families and consumers.

2.4 The health service organisation ensures that its informed consent processes comply with legislation and best practice.

2.5 The health service organisation has processes to identify:

a. The capacity of a patient to make decisions about their own care.

b. A substitute decision-maker if a patient does not have the capacity to make decisions for themselves.

Sharing decisions and planning care 2.6 The health service organisation has processes for clinicians to partner with patients and/or their substitute decision-maker to plan, communicate, set goals, and make decisions about their current and future care.

2.7 The health service organisation supports the workforce to form partnerships with patients and carers so that patients can be actively involved in their own care.

Health literacy

Communication that supports effective partnerships

2.8 The health service organisation uses communication mechanisms that are tailored to the diversity of the consumers who use its services and, where relevant, the diversity of the local community.

2.9 Where information for patients, carers, families and consumers about health and health services is developed internally, the organisation involves consumers in its development and review.

2.10 The health service organisation supports clinicians to communicate with patients, carers, families and consumers about health and health care so that:

a. Information is provided in a way that meets the needs of patients, carers, families and consumers.

b. Information provided is easy to understand and use.

c. The clinical needs of patients are addressed while they are in the health service organisation.

d. Information needs for ongoing care are provided on discharge.

Partnering with consumers in organisational design and governance

Partnerships in healthcare governance planning, design, measurement and evaluation

2.11 The health service organisation:

a. Involves consumers in partnerships in the governance of, and to design, measure and evaluate, health care.

b. Has processes so that the consumers involved in these partnerships reflect the diversity of consumers who use the service or, where relevant, the diversity of the local community.

2.12 The health service organisation provides orientation, support and education to consumers who are partnering in the governance, design, measurement and evaluation of the organisation.

2.13 The health service organisation works in partnership with Aboriginal and Torres Strait Islander communities to meet their healthcare needs.

2.14 The health service organisation works in partnership with consumers to incorporate their views and experiences into training and education for the workforce.

National Safety and Quality Healthcare Standards Standard 2 – Partnering with Consumers

The Australian Commission on Safety and Quality in Healthcare provides a blueprint for how partnerships with consumers should be achieved. This blueprint is referred to as National Safety and Quality Health Service Standard 2: Partnering with Consumers. You will hear a lot about Standard 2 and the overall intent is to create a health service that is responsive to consumer input and need. The organisation must demonstrate through an accreditation process, every four years, that it meets the requirements for Standard 2. The requirements are provided in the below table.

Chapter Four WCHN Consumer Engagement for Children and Young People


Chapter Four WCHN Consumer Engagement for Children and Young People

Children and youth voice

No matter how small you are the voices of children and young people, are important to those of an be heard. Children and young people have a right to comment within the WCHN which means:

> Have a say about what it is really important to them.

> Provided with the infrastructure and sounding boards for their decision to be heard.

> Be listened to.

> Be given clear objectives and limits of their influence.

> Provided with appropriate reimbursement in accordance with developmental information.

> Participate in a way that interests them.

At the ward and service level children and young people are encouraged to be involved in health decision making and planning.

The organisational has designed two formal committees and provides a variety of opportunities for young people to make decisions.

Throughout the year children and young people are involved in training staff,being project members, creating videos and sitting on committees. The Youth Advisory Group and Kids Klub provide to the organisation:

> Quality improvement activities

> Consulting on consumer information

> Running and operating health conferences

> Helping to co-design research

> Participating on staff selection panels

> Initiating their ideas

> Developing sound clouds and vlogs

WCHN Child and Youth Engagement Framework

To fully understand how to involve children and young people, in 2018 the Youth Advisory Group developed a framework for engagement. Download your copy from the website or ask the Director Consumer and Community Engagement.

The WCHN Youth Advisory Group

Chaired by a young person from the Network, this is the peak body for youth and children for the Network. The group meets quarterly and operates as a consultative group, comprised of 20 young people aged 12–25. Young people lend their advice, opinions and lived experience to influence better health outcomes.

The group has a yearly activity plan. Every three months the group rigorously audits a service in the Hospital, reviewing the service’s ability to deliver safe, quality and comfortable care to teens and children. The Network is proud to partner authentically with young people from across all divisions to ensure youth are empowered to make change.

WCHN Kids Klub

A group of kids aged less than 12 years of age who help adults do the “thinking” for Hospital and Network related issues. Kids Klub allow children and adults to share the decision-making, children lead and initiate action and are assigned tasks to work on. Consultations occur with the Director of Consumer and Community Engagement and tools like arts, crafts, lego, drama and sports are weaved into consultative sessions. Parents and Caregivers are encouraged to join the Kids Klub, as there is always a task for caregivers.

Getting involved

There is a special consent form that can be downloaded from the Women’s and Children’s Hospital website for young people aged 12–16 years of age who want to get involved in the Youth Advisory Group. For children under the age of 12 caregivers provide consent by completing the WCHN Consumer Database Membership Form.

What does orientation look for like for children and young people?

Children and Young People are provided with a very special and tailored orientation to the Kids Klub and Youth Advisory Group. The Orientation covers expectations, fire training, hand hygiene awareness, reimbursement and also looks at personal learning goals. There is a specially made checklist that is completed with the Director Consumer and Community Engagement.

For some young people on the Youth Advisory Group one of their learning goals relates to getting credit for school work.

I am ten years old and I participate in the Women’s and Children’s Kid

Klub. Sometimes we build Lego concepts about what we want in or want to see in the hospital, that is not included in the Hospital already. We try to share a lot of information in the time that we have. I got involved in the Kids Klub because I would like to change the Hospital so it is better for kids.

Jayden Consumer Representative

http://wch.sa.gov.au/support/consumer/documents/Consent_Form_Youth_Advisory_Group.pdf

http://wch.sa.gov.au/support/consumer/documents/consumer_register_membership_form.pdf


Chapter Five Consumer and Community Engagement and Research


Chapter Five Consumer and Community Engagement and Research

WCHN Consumer and Community Engagement and Research

WCHN adopts the National Health and Medical Research Council model and framework for consumer and community participation in health and medical research.

About the NHMRC Framework

The Framework is a guide which requires the WCHN to adapt, to meet local research requirements. Universal principles of framework do apply across the National health jurisdiction principally that consumer participation in research requires structure, resourcing and attitudes; to facilitate co-design. The Framework provides a philosophy that consumers with research will collaborate by drawing upon lived experience and academic knowledge to strengthen the quality of health and medical research in Australia.

The framework applies to a research team, a research organisation, researchers, clinical scientist, those involved in clinical practice guidelines, public health researchers and consumers involved in research.

WCHN partnerships in research

The Network partners with all major academic institutions in South Australia, the South Australia Medical Research Institution (SAMRI) and specific academic bodies and schools like the Robinson Institute.

WCHN primary role

The Consumer and Community Engagement Unit provide expert advice and consultancy on the translation of the NMHRC framework. The Unit also helps find consumers (population groups, specific groups and health interest groups to support co-design). The WCHN also provides its research partners access to members on the Consumer Governance Structure. WCHN supports its consumers to be involved in quality research projects and improvements such as the development of clinical practice guidelines.

The Consumer and Community Engagement Unit supports its consumers to participate in state-wide communities of practice, state-wide reform committees and targeted health issue groups like the “breastfeeding policy committee” or “outpatients reform committee”.

The Director Consumer and Community Engagement is also involved in a number of clinical trials and research projects as an associate investigator. The role of the Director is to be the principle consultant on how to involve consumers in a particular research project. The Director is involved in a number of funding applications.

Consumer involvement

Similar to motives to improve organisational, strategic, clinical and service delivery, consumers choose to get involved in research because they want actively improve health outcomes. A number of our consumers have had experience with rare, chronic or deliberating illness or as caregivers, and want turn negative health experiences into something positive, like finding a cure or better treatment options.

Practical issues in WCHN research projects

As a member of a research project or quality improvement there will be key documents that will support staff to appropriately engage including:

> Terms of Reference (if you are a committee, steering group, research panel or reference group).

> Job Description (for all committees and activities).

> Procedure for selecting, implementing, supporting, addressing any conflicts and evaluation of consumer work (known as PRD2015_023 “Consumer and Community Engagement on Working Groups, Committees, Projects and Advisory Groups).

> An identified key contact person and The mutual support of the Director Consumer and Community Engagement.

Ways to be involved in research

WCHN consumers can be involved in:

> Editing questions and lay summaries of research.

> Support the promotion of work through its informal and formal community networks.

> Participating as a member on a research reference panel or group.

> Designing plain language summaries to ensure that the community can understand academic and clinical terms.

> Sit on a clinical steering panel or group. Often there is a mix of stakeholders and the Network will always ensure there are at least two consumers or community members in the steering group.

> To comment on Basecamp to help develop methodologies for research.

> Carry out interviews or co-facilitate focus groups.

> Analyse results interviews or focus groups.

> Reviewing grant applications.

> Being part of research teams across the research cycle.

What do I need to do to get involved?

When you register for the WCHN consumer database make sure you indicate that you are keen to participate in research. The monthly WCHN e-newsletter will provide a range of current opportunities to get started with a project with one of our research partners.

Young people are really valued at the Hospital and one of the roles

that I have been asked to do is sit as one of two youth representatives on a state-wide clinical trial reference panel. Allan says it is a posh group, I guess it is. At first I was really nervous but because I knew what was expected of me, I knew I had the support of the WCHN Youth Advisory Group and I wanted to be able to have a big impact that made a difference for other teens, the butterflies soon disappeared.

Tahlia Consumer Representative

WCHN Health Consumer Engagement research cycleii

Consumer and Community Engagement in research is not about recruiting participants for trials, to be exploited as a recruitment tool or an activity to “tick a box” for funding applications.

Deciding what to research

Letting people know the results

Doing it

Translating the research into practice

Deciding how to do it

THE RESEARCH CYCLE

Evaluating the success of the

research

Chapter Six Consumer and Community Engagement Unit


Chapter Six Consumer and Community Engagement Unit

The Consumer and Community Engagement Unit

Made up of four areas the Consumer and Community Engagement Unit is responsible for all WCHN public participation. The four areas include:

> Consumer Engagement

> Community Engagement

> Volunteering

> Friends of the WCH Inc.

The Unit has over 1250 workforce members including 6 WCHN staff, 200 Consumer Representatives, 250 Volunteers and 800 Friends of the WCH Inc. members. The Unit is overseen by the Director Consumer and Community Engagement.

WCHN Director, Consumer and Community Engagement

The Director Consumer and Community Engagement position, was established to develop and implement the Women’s and Children’s Health Network’s 2015–2018 Community and Consumer strategy. The role provides high-level advice and consultancy to WCHN staff about health public participation.

It is the Director’s responsibility to ensure that consumers are appropriately supported and resourced, to maximise opportunities, for meaningful participation. This may involve organising interpreter services, assistance with transport, and reimbursement of expenses (where relevant) or meeting preparation.

The role is to ensure that there is a culture and systems embedded for a lived experience to flourish.

Contact

If you would like to contact the Director, Consumer and Community Engagement, please call 8161 6935 or [email protected]

Recognising Consumer and Community Engagement

Annually the Unit hosts an end of year reflections event. All Consumer Representatives are invited to participate in the event, that provides a summary of what has happened in that year.

The event also stages the annual Consumer and Community Engagement Excellence Awards to recognize outstanding achievement in Consumer and Community Engagement. Two awards are presented: one for a WCHN Consumer Representative and the second for a WCHN Staff member.

The WCHN Consumer Representative award is decided by the Director Consumer and Community Engagement, Executive Director Corporate Services, Chief Operational Officer and Chief Executive Officer. The WCHN Staff award is decided by the consumer chairs of the Consumer and Community Partnering Council, Youth Advisory Group, Person and Family Centred Care Network, Cultural Roundtable, WCHN Health Citizen Jury and Health Literacy Group.

Support and exit Interviews

Some WCHN Consumer Representatives are provided with a key contact person who operates as a support person. This support person is often the chair of a committee or manager of an activity.

The Director Consumer and Community Engagement will provide overall support for all WCHN Consumer Representatives and will manage grievance processes.

Consumer Representation is meant to be a time-limited exercise and there will come a time for people to move on. Exit interviews are offered to all Consumer Representatives by the Director Consumer and Community Engagement. The exit interview provides valuable insights into the strengths of engagement and opportunities for improvement.

Where can I find out more information?

The Women’s and Children’s Hospital website provides access to the information outlined in this document and all other pieces of information to make sure you well informed about how to participate (see links).

mailto:allan.ball%40sa.gov.au?subject=

Chapter Seven Let’s Do It!


Chapter Seven Let’s Do It!

Self-checklist (pre-engagement)

The Director Consumer and Community Engagement encourages you to complete the following self-checklist before deciding that this is the time for you to partner with the organisation.

q Do I have some spare time to participate?

q Do I feel that I am well enough or that I can continue with my care duties to get involved in a project or committee?

q Do I have the confidence to speak up and share my thoughts, reactions or ideas?

q Do I have an understanding of what I can contribute?

q Do I have connections with informal or formal community networks like schools, play groups, recreational associations, friends and family who I can access when researching or building ideas?

q Do I have any conflicts of interest to declare or confidentiality issues to discuss with the Network?

Operational checklist (engagement)

q Completed WCHN Consumer Membership Form.

q Signed WCHN Code of Conduct.

q Signed and agreed to WCHN Agreement for Consumer Engagement

q Signed and agreed to WCHN Consumer Confidentiality Form.

q Attended Consumer and Volunteer Orientation session.

q Provided a copy of the clearance to work with children and vulnerable people.

q Received my WCHN ID badge.

q Signed up to Basecamp.

q Signed and agreed to Basecamp Code of Conduct.

q Completed learning and participation goals with the Director Consumer and Community Engagemen.

q Set up a regular support time with the DirectorConsumer and Community Engagement.

q Registered as a vendor with SA Health by providing BSB number and account details.

q Signed a copy of the talent release artwork.

q Provided with the code to access the Consumer Lounge.

Glossary of useful terms

Consumers: patients and potential patients, carers and organisations representing consumers’ interests. When referring to consumers, SA Health is referring to patients, consumers, families, carers and other support people.

Carer: a family carer is someone who provides care and support for their parent, partner, child or friend who has a disability, is frail aged, or who has a chronic mental or physical illness.

Consumer advocate: a person who advocates the consumer perspective and has the requisite experience to speak as an informed consumer.

Community: Refers to groups of people or organisations with a common interest, including non-government organisations who represent the interests of health consumers. While some communities may connect through a local or regional interest in health, others may share a cultural background, religion or language. Some communities may be geographically dispersed but linked through an interest in a specific health issue by the internet, or some other means.

Consumer Engagement: informs broader community engagement. Health consumers actively participate in their own healthcare and in health policy, planning, service delivery and evaluation at service and agency levels.

Community Engagement: refers to the connections between government, communities and citizens in the development and implementation of policies programs, services and projects. It encompasses a wide variety of government-community interactions ranging from information sharing to community consultation and, in some instances, active participation in government decision making. It incorporates public participation, with people being empowered to contribute to decisions affecting their lives, through the acquisition of skills, knowledge and experience.

Consumer group: group of consumers, carers and / or healthcare providers with experience and / or expertise relevant to your health care service. The group is convened to provide advice and feedback to your healthcare organisation on specific issues, including safety and quality improvement activities, patient experience and consumer centred care.

Consumer nominee: a person nominated by a consumer organisation or group for consideration for appointment by the requesting body.

Consumer Representative: a person who represents a consumer organisation or group and is authorised to speak on behalf of that organisation or group, making them accountable to and responsible for reporting back to that organisation or group.

Consultation: a method to engage early with consumers and/or community to obtain feedback on issues, analysis, alternatives and decisions being considered by SA Health. It should be considered as part of an engagement process.

WCHN: Women’s and Children’s Health Network.

Useful links and further information

Code of conduct

Consumer Agreement

Consumer Confidentiality

Membership form

2015-18 engagement strategy

WCHN Opportunities and Training Calendar

Email to the consumer engagement unit

External WCHN Consumer Engagement Wiki

Reimbursement policy

HCA website

National Safety and Quality Standards

i. Developed in accordance with Conflict of Interest statement from Consumers Health Forum of Australia.

ii. The research cycle as described in the National Health and Medical Research Council’s A Model Framework for Consumer and Community Participation in Health and Medical Research (2005)

q q

http://wch.sa.gov.au/support/consumer/documents/consumer_rep_code_of_conduct.pdf

http://wch.sa.gov.au/support/consumer/documents/consumer_rep_agreement.pdf

http://wch.sa.gov.au/support/consumer/documents/consumer_rep_confidentiality_agreement.pdf


http://wch.sa.gov.au/support/consumer/documents/consumer_and_community_engagement_strategy_2015.pdf

http://wch.sa.gov.au/support/consumer/consumer_schedule.html

mailto:mailto:allan.ball%40sa.gov.au?subject=

http://wch.sa.gov.au/support/consumer/index.html


http://www.hcasa.asn.au

https://www.safetyandquality.gov.au/

For more information

WCHN Consumer and Community Engagement Women’s and Children’s Hospital 72 King William Road North Adelaide SA 5032 Telephone: (08) 8161 6935 www.wch.sa.gov.au

This document has been reviewed and endorsed by WCH consumers 2018

If you do not speak English, request an interpreter from SA Health and the department will make every effort to provide you with an interpreter in your language.

www.ausgoal.gov.au/creative-commons

© Department for Health and Welling, Government of South Australia. May 2018. (Digital Media 6851)

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