Involving Consumers

Principles

NSW Regional Health Partners commits to:

Actively involving consumers and community members as part of research teams, recognising that this involvement makes research stronger.

Consumers and community involvement ensures: 

  • Research responds to the recognised needs of those affected by health conditions and or receiving care and support from health services.
  • Research outcomes are accessible understandable and add value.
  • Research outcomes are more likely to be incorporated into everyday practice.

Figure 1: The benefits of consumer and community involvement in health and medical research

Our Position

Our approach to CCI directly aligns with existing national standards that support best practice when involving consumers and community in research. These include:

 
Overview

Who are consumers in health and medical research?

Consumers are people who use, have used, or are potential users of health services. They can include patients, carers, friends, and family members with a lived or living experience of specific health area.

Some consumers have formal roles (such as Consumer Representatives). Regardless of role or title, all perspectives are valuable and can help inform health and medical research, and no single consumer can represent all consumers.

What is lived experience?

Lived experience is the knowledge you gain when you have lived or are living through something. For example, a person with lived experience of mental illness has an increased understanding and knowledge about mental illness, compared to someone who has no experience with mental illness.

What is Consumer and Community involvement (CCI)?

Involvement is where consumers and community representatives actively work with researchers and research organisations to help shape decisions about health research priorities, methods, policy, and practice. Consumers and community representatives are active and valued members of the research team.

Consumer and Community Involvement differs from consumer and community participation or engagement.

Participation is where patients and consumers are participants in a project and data is being collected from them.

Engagement is the process of sharing information or raising awareness of the research (such as its purpose, methods, or outcomes) with consumers and the community. This is a one directional process, where consumers and community are not actively involved in the research process.

Figure 2: The different pathways of activity and communication in consumer involvement, participation, and engagement in health and medical research.

Get involved

To support consumer and community involvement in research, NSW Regional Health Partners provides access to resources and training programs for both researchers and consumers.

If you are an individual willing to share your lived experience with health and research teams – sign up to Consumer Connect.

If you are a researcher or a health staff member looking for consumers to participate in your projects – request a consumer representative.