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.