Consumers in health research
In a health context, a consumer is anyone who uses, or may use, health services or participate in health research. This includes patients, potential participants, carers, families and community members.
Consumers bring lived experience that helps ensure health research and clinical trials are relevant, accessible and responsive to community needs.
Working in collaborative partnership with consumers supports more inclusive research that is better designed, communicated and delivered.
“People are at the centre of health and medical research. When consumers and communities shape research priorities, design, delivery and translation, research is more relevant to real world needs and better positioned to improve health outcomes.”
- Statement on consumer and community involvement in research
Types of consumer partnerships
Consumer partnerships may include one of more partnering types:
- Informing - communicating project updates, providing patient materials, public health announcements
- Consulting - patient experience surveys, focus groups, interviews and, feedback forums
- Involving - consumer representatives on committees, research proposal reviews
- Collaborating - consumer and researcher co-design teams, advisory roles
- Leading - consumer-led advocacy bodies, consumer-designed research and evaluation.
Roles and responsibilities
To understand the roles of consumers and researchers in health research, see the Statement on Consumer and Community Involvement in Health and Medical Research.
Partnering with consumers resources
The resources below provide practical guidance to support partnering with consumers across the Victorian health and research sector. They are curated from a range of organisations to support practice across Victoria.
Partnering with consumers in health and research
View more View lessAustralian Clinical Trials Alliance – Toolkit for Researchers and Research Organisations
An interactive map that provides information on how researchers and research organisations can involve and engage consumers to help shape research throughout its lifecycle
VCCC Alliance – Consumer engagement resources
A curated collection of Victorian tools, templates and guidance to support effective partnerships with consumers across health services and research.
Victorian Cancer Integrated Services – Consumer engagement resources for health professionals
Frameworks, toolkits and guidance to help organisations embed consumer participation and co-design in practice.
Australian Commission on Safety and Quality in Health Care – Co-design and consumer engagement
National guidance on co-design principles such as partnership, inclusion and shared decision-making in healthcare.
Consumer Health Forum
Consumer Health Forum is the national peak body working to achieve safe, quality, timely healthcare and improved understanding of our health system for all Australians
Victorian guidance
View more View lessPartnering with consumers | Safer Care Victoria
Central hub of guidance, tools and initiatives to support Victorian health services to partner with consumers in care, service design and improvement.
Partnering in healthcare framework | Safer Care Victoria
Victorian framework providing practical strategies for health services to work in partnership with consumers to improve care and outcomes.
How to engage a consumer representative | Safer Care Victoria
A plan and checklist to help with consumer recruitment, orientation and support.
Consumer and community involvement | Monash Partners
Training modules and resources to support researchers and health professionals to embed consumer involvement and co-design across the research lifecycle.
Health Voices Victoria
A suite of practical resources developed for Victorian health services to strengthen consumer partnerships and improve engagement practices.
Inclusive consumer partnering
View more View lessAboriginal and Torres Strait Islander peoples
Victorian Aboriginal Community Controlled Health Organisation (VACCHO) – ACCORD
A framework and tools to support culturally safe, respectful partnerships with Aboriginal communities in Victoria.
Rumbalara Aboriginal Co-operative – What is a clinical trial?
A plain language resource developed with Aboriginal communities to support understanding of clinical trials and informed participation.
Culturally and Linguistically Diverse communities
Melbourne Academic Centre for Health – Culturally and Linguistically Diverse Engagement in Research
A project focused on improving inclusion of culturally and linguistically diverse communities in research through tailored engagement approaches.
Australian Clinical Trials Alliance – Advancing clinical trial engagement, involvement, and participation for people from culturally and linguistically diverse backgrounds
Practical recommendations to support inclusive trial design, recruitment and participation.
Disability
Victorian Government – Co-design with people with disability
Explores how co-design can support inclusion of people with disability in the design of policies, programs and services in Victoria.
National Disability Research Partnership – Embedding Co-design in your Research
Practical guidance on working in partnership with people with disability in research, emphasising shared decision-making and lived experience.
Gender
Gender equity in research | NHMRC
Guidance supporting a more inclusive and equitable research system that reflects diverse lived experiences.
Children and young people
How to co-design with young Victorians | VicHealth
Practical guidance on engaging young people in co-design, including building trust, sharing decision-making and valuing lived experience.
Young Voices | Vic Gov
Strategies to ensure children and young people are actively involved in designing policies and services that affect them.
Older people
Better Together: A practical guide to effective engagement with older people | Aged Care Quality and Safety Commission
Practical guidance on inclusive engagement with older people, including communication and participation strategies.