1. Overview

This procedure outlines ways in which the RCH supports consumer participation and engagement as part of hospital operations to enable efforts to deliver against the organisations vision of creating a world where all children thrive.

The objective of this procedure is to ensure a standardised approach to the way in which hospital staff engage and partner with consumers to better understand the individual consumer’s needs, concerns and values. It supports staff in providing more appropriate treatment and care plans and leads to better clinical and patient outcomes.

2. Definition of Terms

Consumer engagement - Consumers, carers and community members are meaningfully involved in decision making about health policy and planning, co-design and organisational development of The Royal Children’s Hospital. The term ‘consumer’ is defined in the National Safety and Quality Health Service Standards as 'Patients and potential patients, carers, and organisations representing consumers' interests'.

Consumer representative - consumer committee or working group members who bring views based on their experience of a condition or care or their knowledge of a particular population group. In this case, rather than being a representative of a particular group, they are committee members who act as individuals or advocates (Health Issues Centre 'Getting Started.  Involving Consumers on Committees'. Page 7).

Child and young person (or patients or potential patients): refers to those who are direct recipients of care from staff at The Royal Children’s Hospital, Melbourne or may receive medical care from us in the future. This group is also known as patients or potential patients. In some instances, this definition may extend to include the voice and participation of other children and young people that are members of our broader community. This may include patients who meet the National Disability Insurance Scheme access requirements.

Families and carers: refers to a person who provided care to child or young person who is receiving care from The Royal Children’s Hospital, Melbourne, with whom they are in a care relationship (i.e. parent or legal guardian).

Consumer advocate: refer to those who voice, represent and advocate on behalf of children, families or communities and are accountable to those they represent.

Community:  refers to the broader community The Royal Children’s Hospital, Melbourne operates in. Community includes but is not limited to the healthcare setting, such as business and industry, diversity and inclusion, youth and community development. These community networks exist at a local state and national level. As a leading provider of paediatric health services globally, international networks are equally important to us.

Diversity: This is a broad concept that includes all Australians. Recognising that each person is a unique and complex being is integral to understanding and responding effectively to health care needs at an individual, family or community level. Diversity refers to age, personal and professional background, education, function and personality. It includes lifestyle, socio-economic status, sexual preference, gender identity, ethnicity and status within the general community. 

3. Procedure details

Evidence indicates that consumer engagement leads to improvements in the safety and quality of care delivered.  Participation occurs at a number of levels: patient, service, system and community level.

The way we engage consumers is varied and can range from informing and consulting to empowering consumers to design projects and intervention that address an operational need, gap or improvement (IAP2 Spectrum of Participation).

RCH recognises the right of the child and young people to seek confidential health care having regard to their maturity and the law of Australia, with patient, family, carer and community participation supported in accordance with RCH values and Code of Conduct.

The principles upon which consumer engagement, as defined in the RCH Partnering With Consumer Framework, are:

Consumer participation is accessible and inclusive and values their rights

We acknowledge that consumers have rights in their healthcare, including in planning and decision-making. We work to uphold those rights and ensure consumers are supported to realise them.  

All children and young people (regardless of age, background, physical or mental abilities) have a claim to respect, dignity and protection at the Royal Children’s Hospital. 

We present information to patients, families and carers that is accessible, truthful, clear and delivered with sensitivity in a safe and supported environment.  

Lived experience can show us the way

We listen to patients, families and carers as they have the living experience that we can learn from. By embracing living experience, a patient’s care pathway is tailored to their individual needs.  

Equally, we are clear and transparent to consumers about their role in consumer participation, how the information they provide will be used and shared, and how it will inform decision-making and change. We involve and value the participation of consumers in health care planning, research and decision making at all levels from individual care through to service level and organisational governance.

Partnering in the care journey

Decision-making is multidisciplinary, collaborative and respectful of a patient’s decision-making capacity.  Patients, families and carers are presented with information about what is happening to them (or their child) in an age-appropriate, culturally safe, and accessible manner. 

Our team members are trained and supported to effectively and respectfully partner with consumers. We work together to support patients in becoming principal decision makers in their health care journey. We also ensure participation is transparent and that consumers know how their input will be used and how it influenced decision-making, policy, planning and or research outcomes. 

Excellence and innovation in all we do

We strive for excellence in all our interactions. We use evidence and best practice to provide best possible ooutcomes, in clinical care and non-clinical interactions. We work togehter to upskill our team members, consumers and community to be better.

We bring compassion and humility into each conversation

Children and families use the services of The Royal Children’s Hospital in times of need. Compassion and humility do not absolve personal responsibility for one’s own actions but ensures an equal and respectful exchange that considers the needs, background and experiences of consumers, community and our team.  

We recognise the wide-reaching impacts of trauma, and how it affects our consumers in accessing and participating in healthcare. We take a trauma informed approach which supports safety, trustworthiness, choice, collaboration and empowerment. 

We are reflective of the community we serve

Our team members, consumers and community groups are as diverse as the community we serve. We value diversity of thought, experience, representation and action. We involve consumer from diverse communities that reflect a range of health care needs. Diversity will drive equity in care and health outcomes. 

We actively build relationships with community organisations which represent the interests of different community cohorts and seek advice from them as to the requirements and mechanisms for consumer input. Partnering with these groups ensures the consumer voice is respected and authentically represented. 

Consumer involvement

RCH staff responsible for project planning and implementation are equally responsible for onboarding and ongoing management of consumer representatives.

RCH staff considering or involved in mentoring and supporting consumer representatives can access supports and resources via: Partnerships and Consumer Engagement : Resources (rch.org.au)

Remuneration

Consumer involvement in RCH committees and working groups is voluntary in nature. No remuneration or sitting fees are available unless offered by a specific project or working group.

Out-of-pocket expenses incurred as part of participation (e.g., parking or public transport) will be reimbursed on prior approval. This does not extend to virtual meetings.

4. References

Internal references

Consumer Engagement Policy

Consumer Representative Volunteer Appointments to Committees procedure

External references

Partnering with Consumers Standard 2

Health Issue Centre 'Getting Started, Involving Consumers on Committees'

Safer Care Victoria, Partnering with Consumers

NDIS Practice Standards - NDIS Practice Standards and Quality Indicators Jan2020 version 3