Community participation in research

Community participation in research

Cancer Council NSW highly values the views of the community we serve and represent. That’s why we believe that cancer survivors, cancer carers, and members of the general public should be at the heart of cancer research.

Who is a consumer?

Members of the public who are involved in research are often referred to as consumers. This term simply means anyone who has been affected personally by cancer, either as a patient, survivor, carer, or close family member or friend of someone diagnosed with cancer.

Why your involvement is important

Members of the cancer community have a unique insight into the problems faced by those going through cancer, and their involvement in research means that research is conducted in partnership with the people it is intended to benefit. This partnership helps to ensure real-world needs are met by the research Cancer Council NSW funds.

We expect all researchers who apply for our funding to include a member of the cancer community (cancer patients, survivors, or carers) in their research.

All research grants we award are reviewed by our Consumer Review Panel who are trained members of the cancer community. Read more about how we fund research.


How you can get involved

There are two ways you can get involved in research as a consumer:

  1. Complete our Consumers in Research training and become qualified to work directly with cancer researchers.
  2. Complete our Consumer Review Panel training and help Cancer Council NSW make research funding decisions.

 

Consumers in Research training

Become skilled to work directly with cancer researchers

This free annual training course covers cancer research fundamentals, research methods, and ethics and governance; and explains how you can work directly with a researcher to make a valuable contribution to their research project. Attendees will also have the opportunity to chat with experienced consumers and researchers. The training is delivered as a blended learning course, which means there are online training modules and a half-day face-to-face workshop. 

Following training, participants will be well-placed to assist researchers by providing a consumer perspective in the researcher’s grant proposal and conduct of research. Many trained consumers are involved in research projects across the state, and there is always demand for more. The time commitment required to assist researchers varies, and will 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.

All costs to attend the face-to-face workshop are covered by Cancer Council NSW, including travel and accommodation if required. Please note that places are limited.

The next face-to-face workshop will be in September 2018

If you are offered a place, you will need to complete the online training modules before attending the face-to-face workshop. However, you do not need to wait, you may access the online modules anytime. You may also complete the online modules even if you do not wish to apply for the face-to-face workshop.  

 

Consumer Review Panel training

Learn how to help Cancer Council NSW make research funding decisions

When applying for Cancer Council NSW funding, researchers are required to complete a two-page form that explains the societal importance of their project. Cancer Council NSW invites graduates of this ‘Consumer Review Panel’ course to score the researchers’ forms and attend a meeting to discuss the scores allocated to each researcher’s application. The scores from this process influence which projects receive funding. We do this to ensure the research we fund meets real-world needs and is of benefit to the community we serve. Panel members are not required to review scientific content and, therefore, no scientific knowledge is required. However, participants must have an interest in research and be willing to learn some scientific and medical terms.

The half-day training covers the grant review process, the consumer review form, and how to review and score each criteria on the form. Attendees of the course will have an opportunity to practise scoring example consumer review forms and discuss their scoring rationale in a mock panel meeting. At the end of the session you will have the necessary knowledge and skills to review consumer-specific information of research grant applications Cancer Council NSW receives.

To be eligible to attend the Consumer Review Panel training, consumers must have completed the Consumer in Research training.

All costs to attend the training are covered by Cancer Council NSW, including travel and accommodation if required. Please note that places are limited.

The next training date will be in 2018. If you complete the ‘Consumers in Research’ training in 2017, you are eligible to submit an expression of interest for the Consumer Review Panel training when the call is made.

If you require any further information, please contact the Research Grants Management Team at research@nswcc.org.au

 


Resources for consumers currently working with researchers

Guide to being a consumer (PDF) – 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.

NHMRC guide on how research is scientifically reviewed – 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.

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