FAQs

Studies have shown that the quality and content of research benefits a great deal from consumer engagement – in its direction, its applicability to community needs, and its end value for people affected by cancer (1). It will benefit from an informed consumer input at all stages of the research process. Most research funders require…

The researcher/s should take you step-by-step through their project and provide you with documents and other information required for an understanding of their work. If the project is more than a proposal, they will usually invite you for at least one face-to-face meeting so you become familiar with the team and get an idea of…

You are not there as a mini scientist. Nor are you there as a Cancer Voices representative, presenting our organisational view – although you and the researchers are welcome to check our Position Statements at www.cancervoices.org.au Cancer Voices’ nominees have usually completed the Consumer Research Training Program provided annually by Cancer Council NSW (CCNSW), with…

For many consumers, their first experience of involvement will be to assist with an application for research funding (a grant). Your role here is to provide the consumer perspective on the research, ensure the researchers have considered its impact and how the community will be informed about the results. What you’re looking for will depend…

In this kind of research, researchers are working with cells or laboratory animals like mice or rats (sometimes called the ‘mouse model’) rather than patients. Your involvement is therefore likely to be relatively simple. Ask them how their research will eventually impact on real patients. Make sure they have a plan for having consumers involved…

Contributing as a consumer representative to this kind of research is likely to be similar to that for laboratory-based research, but because the researchers are working with cancer patients, there are additional questions to think about. You should make sure that their plans take the patients’ needs and problems into account, and are sensitive to…

Some research funding organisations have consumers on committees that determine which applications should be funded. They should give you all the information you need to do your job – if not, ask. They will usually have their own set of assessment criteria; your job will be to consider each application against those criteria. You should…

If you are invited to join an advisory panel or research team at a research institute, you might do things such as: working with practitioners and scientists to identify research priorities; providing the consumer perspective on research funding applications or applications for permission to conduct a study that researchers must make to an ethics committee;…

You might be asked to sit on other kinds of committees, for example, a committee that is reviewing treatment guidelines or examining ways services are delivered. Again, your job is to take as broad and objective a view as possible and consider the issues from the perspective of consumers – what issues will patients likely…

Most cancer research funders now require evidence in grant applications that the applicant has engaged meaningfully with a consumer group / informed consumers in the development of their study, and intends to maintain this collaboration throughout project execution. This applies to all types of cancer research – from the laboratory to clinical through to psychosocial…