Cancer Voices NSW

Provides the independent, 100% volunteer, voice of people affected by cancer.

Established in 2000, we are active in the areas of diagnosis, information, treatment, research, support and care working to improve the cancer experience of the estimated nearly 48,000 people who are diagnosed in our state each year. To achieve this we work in partnership with decision makers and providers of these services, ensuring the patient perspective is heard from planning to delivery.

An independent voice of people affected by cancer

Cancer Voices members include people with cancer and cancer survivors, carers, cancer care professionals and interested organisations.

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CANCER SURVIVORS
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CARERS
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INDUSTRY PROFESSIONALS
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SUCCESSFUL PROJECTS

How we work

Nothing about us without us

01

Establish a partnership

Consumers shaping research ‘Nothing about us without us’ Elisabeth Kochman, Murray McLachlan, Shirley Baxter, Kathryn Leaney

02

Development of a training course for consumers presented by Cancer Council NSW

03

Matching process to connect consumers and researchers

04

Development of and participation in a Consumer Review Panel

Want to know more?

Benefits of consumer engagement
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 evidence that applicants for their funding have engaged in a meaningful way with informed consumers.
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 on the type of research being proposed.
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 if they are awarded funding. Finally, make sure the ‘lay summary’ of their research is clear and easy to understand. Your role in a project that doesn’t involve humans will probably be less active.
    • 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 the issues that surround a cancer diagnosis and the experience of cancer treatment. For clinical trials, your work may range from reviewing and commenting on the criteria about who can participate, to reviewing questionnaires or other information to be given, the way information is given and recruitment of and support for trial participants. In this role, it will help if you can imagine what it would be like if you were a participant in clinical research – what sort of information would you be looking for, how will it work in practical terms, what support might you need? Your perspective here can be really useful to make a trial or study a better experience for cancer patients and their families.
    • Some researchers will give you plenty of time to consider their research proposal and the documents to be submitted with their grant application. Unfortunately, however, many will only give you a short time in their rush to submit their application by the deadline. If this is the case, try to make the time to understand what the project will be and to make sure that at least the consumer summary is in language which is easy for non-medical people to understand and provides a fair representation of what the researcher is trying to do. If funding is awarded, you should expect to continue as the consumer representative for that project.