Key terms

We know words are used differently across the health system and across communities. We also know words change often. Here are the key terms we use in All of Us.

Consumers: People who use, have used, or are potential users of health services. Some consumers have formal roles (such as Consumer Representatives) – others don’t want to. All perspectives are valuable. No one can represent all consumers.

Carer: A person who provides care and support to a family member, friend or as part of a kinship system. Consumers and carers are different people with different perspectives.

Communities: Groups of people who share things such as culture, language, religion, beliefs, location, sexuality or gender. We use ‘communities’ because there is no one ‘community’.

Engagement: Consumers, carers or communities taking part in the planning, design, delivery, measurement and evaluation of systems and services^[1][2]. There are different levels of engagement^[3].

Engagement activity: Specific ways that consumers, carers and communities take part. Here are a few examples: co-design, service design, research, hospital redevelopments, policy, strategy and reform.

Engagement process: The parts or ‘phases’ that happen across a project. We use four phases: Plan, Invite and support, Do and decide, Review and learn.

Facilitator: A person leading activities and making sure the Six ways of working happen. Facilitators can be NSW Health staff, contractors, consumers, carers or community members.

Lived or living experience: The knowledge you get when you have lived or are living through something. For example, a person with lived experience of mental illness brings their understanding and knowledge from their direct experience ^[5].

Marginalised: A person or life experience (such as being homeless or leaving foster care) that has been or is excluded from support, community connection and services.

Power: Someone’s ability to do something – for example, set an agenda or decide what engagement happens. Power is getting to decide who gets listened to.

Safety: Safety can be physical, emotional, legal and cultural. No one should be harmed by their experience of engagement. Learn what we meant by safety.

Tool: A tool helps you do something – for example, have a conversation, create a safety plan or plan a project with consumers, carers and communities. Access All of Us tools.

References

1. Australian Commission on Safety and Quality in Health Care. The NSQHS Standards: Partnering with Consumers Standard
2. New South Wales Health. (2022). Future Health: Guiding the next decade of care in NSW 2022-2032
3. Agency for Clinical Innovation NSW. (n.d.). Partnership Foundations [online]
4. HETI Facilitation Accreditation Program. (n.d.)
5. South Eastern Sydney Local Health District. (n.d.). Consumer Partnership Framework 2021-2024.