At Cancer Council NSW, we believe that cancer survivors and carers should be at the heart of research. Members of the cancer community have a unique insight into the problems faced by those going through a cancer journey. When they share their experiences and insights directly with researchers, research is conducted in partnership with the people it is intended to benefit, and the community voice is heard throughout the process.
Cancer Council NSW values the views of community we serve and represent, very highly. That’s why we expect all researchers who apply for our funding to have cancer survivors or carers involved in their research. Community involvement improves research quality, and helps to ensure that real needs are met. After a four-fold increase in demand from researchers last year, the need for trained survivors and carers willing to work directly with researchers has never been higher. Both consumers and researchers find consumer involvement a rich and rewarding experience.
The one day training will provide an overview of cancer research and how you can work directly with researchers to make a valuable contribution to their research project. Participants receive a substantial reference manual full of information above and beyond that presented in the training. All costs are covered by Cancer Council NSW, including, if required, travel and accommodation.
The training covers:
- How cancer works
- Cancer research in Australia
- Types of cancer research
- Research ethics
- Research governance
- Working with researchers
All training participants will be qualified to assist researchers by providing the consumer perspective as they develop their research proposals and conduct their research. To ensure that their research aligns with the needs of the community, Cancer Council NSW requires that all our funded that researchers involve consumers in the process. Cancer Voices NSW assists by providing a service where researchers are matched with trained consumers who can assist them with their research. Many consumers are already involved in research projects across the state, and there is always demand for more. The time commitment required to assist researchers in this way varies, and can be negotiated directly with the researcher based on their needs and your availability. You can meet with researchers face-to-face, or if this is not practical, many successful research relationships are based on communication via email, telephone and Skype.
What is a consumer?
We use the word ‘consumer’ a lot, but who exactly are we talking about? A consumer is simply someone who has been affected personally by cancer, either as a patient, survivor, carer, or close family member. If you fall into this category, you are eligible for the training and volunteering opportunities that are available.
Resources for consumers
Below are a number of resources for current consumers in addition to the manual received during training.
- Guide to being a consumer – a quick two-page guide from Cancer Voices NSW.
- Cancer Australia consumer involvement toolkit – online training for consumers to be involved in cancer research.
- Involving People in Research – information for consumers and researchers developed by the University of Western Australia and the Telethon Kids Institute
- Short guide to peer review – a short guide to what scientific peer review is.
- NHMRC guide on how research is judged – how we decide what research is the best scientifically.
- NHMRC statement on consumer involvement – the National Health and Medical Research Council statement on how consumers should be involved in research.
- Funding research – article about how consumers can be involved in funding research.
- Consumer training article – article about the best ways to prepare consumers for the role.