Guiding principles for involving consumers and community members in health research:
- Consumer and community involvement in research relies on an equal commitment to partnership based on mutual trust with a shared belief in the value of research.
- Involving consumers and community members in research should be planned from the beginning of the project, resourced, monitored and acknowledged appropriately in reporting.
- The roles and responsibilities of consumers and community members should be understood and agreed. Such involvement should be meaningful, rigorous and genuinely contribute to the research process.
- Training and support should be provided to consumers, community members and researchers to work together effectively.
- The contributions made by consumers and community members should be fairly and appropriately recognised and acknowledged.
These principles provide a guiding framework for any organisation planning to build consumer and community involvement into their research activities and programs. They are taken from the Consumer & Community Involvement in Health Research position statement endorsed by Australian Health Research Alliance and Consumers Health Forum of Australia.
The CCI Handbook
A practical, step-by-step guide to moving from good intention to good practice.
This exciting new resource for embedding consumer and community involvement in health research was launched on 19 November 2021. Developed by the Western Australian Health Translation Network for the Australian Health Research Alliance, it is aimed at research organisations, researchers, consumers and funders.
This Handbook builds on the accumulated knowledge and expertise of many Australian and international knowledge-holders and translates decades of research in consumer and community involvement, and provides a very practical guide on HOW to embed CCI. Users are encouraged to adapt and modify this Handbook to suit their own changing needs and circumstances.
A Quick Guide is available for those wanting a short reference version.
“When consumers are included as a valued part of the team, they provide a different way of looking at the research which benefits the researcher, the research organisation and, ultimately, the health consumer.“
George Kiossoglou: Consumer Representative, WEHI and Melbourne Academic Centre for Health
Organisations and toolkits that provide further information on consumer and community involvement:
- Australian Clinical Trials Alliance: Consumer Involvement and Engagement Toolkit
- Australian Health Research Alliance: Consumer and Community Involvement
- Cancer Australia: Consumer Involvement Toolkit
- Consumers Health Forum of Australia
- Health Issues Centre
- National Health and Medical Research Council: Statement on Consumer and Community Involvement in Health and Medical Research (2016)
- National Health and Medical Research Council: Toolkit for Consumer and Community Involvement in Health and Medical Research (2020)
- Victorian Comprehensive Cancer Centre Alliance: Consumer Engagement and Toolkit Resources
- Western Australian Health Translation Network: Involving Consumers in Health and Medical Research: A practical handbook for organisations, researchers, consumers and funders
Contacts to support researchers looking to engage consumers are listed below. Please refer to your relevant organisation or contact your local research office for further information:
- Austin Health: [email protected]
- Mercy Health: [email protected]
- Northern Health: [email protected]
- St Vincent’s Hospital: [email protected]
- The Royal Melbourne Hospital: [email protected]
- The Royal Victorian Eye and Ear Hospital: [email protected]
- The Royal Women’s Hospital: [email protected]
- Western Health: [email protected]