Sometimes people want to contribute to research without joining a clinical trial or other research study. They may have been affected by cancer in the past – either directly or indirectly – and want their experience to help shape future cancer research. Researchers refer to these people as “consumers” to distinguish them from patients or others recruited to a study.
The role of consumers in research has increased over the years. Consumers are now involved in identifying priorities for research and helping to decide which projects should be funded. They may also be asked to review a draft participant information sheet or provide feedback on what a proposed study is asking of participants.
Cancer Council offers an online training course known as the Cancer Consumer Involvement in Research Training Program. This teaches people how to work with researchers.
Cancer Australia developed the National Framework for Consumer Involvement in Cancer Control. This initiative includes a web-based toolkit for cancer researchers and other professionals who involve consumers in their work.
The Australian Clinical Trials Alliance offers a consumer involvement toolkit as well as information about clinical trials in community languages.
Consumer advocacy organisations are available at a national level and in some states. They focus on improving cancer treatment through active consumer participation. To learn more, visit them online at:
If you would like to get involved in research as a consumer, contact one of the above organisations or call Cancer Council 13 11 20.
Video: What is a clinical trial?
In this video, Medical Oncologist Dr Elizabeth Hovey explains what clinical trials are and how they can improve cancer treatment.
Key resource
Download a PDF booklet on this topic.
More resources
A/Prof Brett Hughes, Senior Staff Specialist, Medical Oncology, Royal Brisbane and Women’s Hospital and The Prince Charles Hospital, and Associate Professor, The University of Queensland, QLD; Christie Allan, Clinical Trials Lead, Cancer Council Victoria, VIC; Dawn Bedwell, 13 11 20 Consultant, Cancer Council Queensland, QLD; Joanne Benhamu, Senior Research Nurse, Team Lead, Lung, Colorectal and Palliative Care Trials, Parkville Cancer Clinical Trials Unit, Peter MacCallum Cancer Centre, VIC; Louise Dillon, Consumer; Sabina Jelinek, Clinical Nurse Research, St John of God Murdoch Hospital, WA; Chloe Jennett, Program Coodinator, Cancer Research, Cancer Council NSW; Carmel McCarthy, Consumer; Alison Richards, Research Unit Manager, Medical Oncology Clinical Trials Unit, Flinders Medical Centre, SA; Prof Jane Ussher, Translational Health Research Institute (THRI), School of Medicine, Western Sydney University, NSW; Prof Janette Vardy, Medical Oncologist, Concord Cancer Centre, and Professor of Cancer Medicine, The University of Sydney, NSW.
View the Cancer Council NSW editorial policy.
Need to talk?
Support services
Coping with cancer?
Speak to a health professional or to someone who has been there, or find a support group or forum
Looking for transport, accommodation or home help?
Practical advice and support during and after treatment
Cancer information
Cancer treatments
Learn about common cancer treatments, such as surgery, chemotherapy and radiation therapy
View our publications
Guides and fact sheets for people with cancer, their families and friends