Engaging Consumers


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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.

Download role description template

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.

    • Peoplebank is an online platform run by the Hunter New England and Central Coast Primary Health Network (PHN). It provides an opportunity for local community members to provide their ideas and contribute to a range of projects and activities run by the PHN.
    • Research Register is a central database of people who are interested in contributing to medical research. The Register is run by HMRI and provides researchers with access to potential participants for health and medical research.
    • Stroke Research Register, Hunter is a register for people who have had a stroke or transient ischaemic attack (TIA) who may wish to become involved in stroke and TIA prevention and rehabilitation research.
    • The Hunter Cancer Research Alliance Consumer Advisory Panel comprises community members who are available to provide input on cancer research projects. Researchers can complete an online form to be matched with a volunteer.
    • Hunter New England Local Health Committees provide leadership in the local community to ensure health services meet local health needs and ensure the promotion and enhancement of the health of the community.

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.

    • Health Consumers NSW – is a membership-based, independent, not-for-profit organisation that promotes and practises consumer engagement within the NSW health sector. They aim to create meaningful partnerships between consumers, the health sector and policy-makers;
    • Health Issues Centre – a Consumer Advocacy organisation that will advertise consumer representative vacancies;
    • Carers NSW Australia – have a register of carer representatives;
    • NSW Council on the Ageing  – will promote research participation opportunities to members;
    • Consumer Health Forum of Australia – is the national peak body representing the interests of Australian healthcare consumers. The organisation has developed fact sheets informing consumers on a range of health topics;
    • Palliative Care Australia – has a national register of consumers and carers and guidance on how to engage with consumers.