Consumers are people with lived experiences of health conditions or the use of health services that are relevant to research. Engagement with consumers in ways that value and respect their experiential expertise is fundamental for effective consumer involvement. Consumers may be involved in a variety of ways such as: consultation about potential or current research, membership on a research advisory committee or participation in a co-design process.
Consumers prompt researchers to consider research topics from different perspectives. Aiming for a diversity of consumers in terms of age, gender identity, culture and place of residence will support a diversity of perspectives.
Researchers who are also health practitioners may have contacts with consumers who are suitable to invite. Researchers can also reach out to consumers through professional networks, social media or consumer organisations. Invitations to consumers or calls for expressions of interest should be accompanied by clear statements about the nature and purpose of the consumer role, and that involvement is different to taking part as a research study participant. This role description template is a useful starting point.
Here are some resources to support researchers with consumer engagement and links to organisations that may be able to assist you in identifying suitable consumers for your projects.
Guidance on Effective Consumer Engagement
Consumers can offer expertise based on personal, experiential knowledge. Here are some resources to assist in engaging, preparing and supporting consumers so that the process is meaningful for them and the research gets best value from consumer involvement.
Connecting with Consumers through Local Registers & Committees
These organisations, located in the Hunter, New England and Central Coast areas of NSW, manage registers of consumers. The organisations may be able to assist researchers to connect with consumers for research purposes.
Connecting with Consumers Through State and National Consumer and Peak Organisations
There are a number of organisations who represent consumers and advocate for their involvement in health and medical research. Many peak organisations maintain a register of consumer representatives and will advertise consumer vacancies for projects and committees.
Here are some examples, but there are many other non-government organisations focusing on specific health conditions that may also be able to link researchers with consumer representatives.