Involving consumers in research

Sometimes people want to contribute to research but don’t want to participate in a study. They may have been affected by cancer in the past – either directly or indirectly – so they want to offer their knowledge 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 what projects should be funded. They may also work directly on research studies by providing an informed consumer review.

Cancer Australia developed the National Framework for Consumer Involvement in Cancer Control. This includes a web-based toolkit designed to support CEOs, managers, health professionals, researchers and policymakers in involving consumers in their work. For more details, go to consumerinvolvement.canceraustralia.gov.au.

Cancer Council offers an online Consumers in Research course to help people learn how to work with researchers. For more details, go to cancer.org.au/about-us/ consumertraining.html.

Consumer advocacy organisations operate in most states. They focus on improving cancer treatment through active consumer participation.

To learn more, click on the links below:

If you would like to get involved, contact one of these organisations or call Cancer Council 13 11 20.

This information was last reviewed in July 2018. View who reviewed this content.

A/Prof Andrew Redfern, Consultant Medical Oncologist, Fiona Stanley Hospital, Clinical Academic Oncologist, The University of Western Australia, and Lead Clinician, State Breast Cancer Collaborative, WA; Christie Allan, Program Coordinator – Clinical Trials, Cancer Council Victoria; Bronwyn Chalmers, Clinical Trial Coordinator, Westmead Breast Cancer Institute, NSW; Sarah Coulson, Coordinator, Oncology Clinical Trials, Projects and Research, Tasmanian Health Service, TAS; Kate Cox, 13 11 20 Consultant, Cancer Council SA; Annette Cubitt, Clinical Trials Manager, Department of Medical Oncology, Cancer Care Services, Royal Brisbane and Women’s Hospital, QLD; Pete Currie, Consumer; Amy Ives, Clinical Trials Coordinator, Department of Medical Oncology, Cancer Care Services, Royal Brisbane and Women’s Hospital, QLD; Sabina Jelinek, Clinical Research Nurse, Murdoch Oncology Clinical Trials Unit, WA; Dr Visalini Nair-Shalliker, Research Fellow – Prostate, Cancer Council NSW; Karlie Neilson, Project Officer – Cancer Research Division, Cancer Council NSW; Prof Mark Rosenthal, Medical Oncologist, and Director, Parkville Cancer Clinical Trials Unit, VIC; Joan Torony, CEO, TROG Cancer Research, NSW; Rebecca Weselman, Senior Clinical Trials Coordinator, Oncology Clinical Trials, St John of God Murdoch Hospital, WA; John Williams, Research Governance Officer, Cancer Council NSW.

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