Community involvement in research

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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 highly values the views of the community we serve and represent. That’s why we expect all researchers who apply for our funding to have cancer patients, survivors, or carers – ‘consumers’ – involved in their research. Community involvement improves research quality, and helps to ensure that real-world needs are met. Both consumers and researchers find consumer involvement a rich and rewarding experience.

Cancer Council NSW is community funded and we involve consumers in all facets of the organisation to ensure we serve the community that supports us. We highly value the input of consumers in our research funding decisions and all research grants we award have been reviewed by a panel of trained consumers.

 

Would you like to be directly involved in cancer research or help Cancer Council NSW make research funding decisions?

If you would like to assist researchers by providing your insights as a cancer patient, survivor or carer, we are providing free, one-day Consumer in Research training in Sydney on 5th September to help you do so.

If you would like to assist Cancer Council NSW in making funding decisions, we are running free, half-day Consumer Review Panel training in Sydney on 6th September 2016 to train consumers to participate on our grant review panel. Attendees must have completed the Consumer in Research course either in 2016 or in a previous year.

Please send completed Expression of Interest forms to research@nswcc.org.au by 5th August.

 

Who is a consumer?

We use the word ‘consumer’ a lot, but who exactly are we talking about? A consumer is someone who has been affected personally by cancer, either as a patient, survivor, carer, or close family member or friend of someone diagnosed with cancer. If you fall into this category, you are eligible for a range of training and volunteering opportunities.

Training opportunities

Cancer Council NSW provides training courses for consumers to work directly with researchers or help us make funding decisions.

Please note that no prior scientific or research knowledge is required.

Consumer in Research training

This free, one-day training course will provide an overview of cancer research in Australia and how you can work directly with a researcher to make a valuable contribution to their research project.

The training covers:

  • Cancer in Australia
  • Cancer research fundamentals
  • Types of cancer research
  • Research ethics
  • Grant applications
  • Working with researchers
  • Other roles for consumers in research

Attendees of the course will also have the opportunity to chat with experienced consumers in research and researchers.

Following the training, participants will be well-placed to assist researchers by providing a consumer perspective in the researcher’s grant proposal and conduct of research. To ensure that research aligns with the needs of the community, Cancer Council NSW requires that all our funded researchers involve consumers in their research process.

To connect consumers and researchers, our friends at Cancer Voices NSW provide a service where researchers are matched with trained consumer advisors. 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 in this way 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 are covered by Cancer Council NSW, including travel and accommodation if required.

Please note that places at the training session are limited. To apply to attend the training, please fill in the Expression of Interest form below and submit to research@nswcc.org.au. If you wish to attend both Consumer in Research and Consumer Review Panel training days, please indicate this on the Expression of Interest form (two forms are not required).

Research Training Expression of Interest Form 2016

Consumer Review Panel training

This free, half-day training provides consumers with the necessary knowledge and skills to review consumer-specific information of grant applications Cancer Council NSW receives for funding.

When applying for Cancer Council NSW funding, applicants are required to fill in a two-page form that is subsequently reviewed by a panel of trained consumers. The criteria addressed by applicants in the form are non-scientific; members of the consumer review panel are not required to review scientific content and scientific knowledge is not required. However, participants must have an interest in research and willingness to learn some scientific and medical terms. The purpose of the consumer review is to ensure the research we fund meets real-world needs and is of benefit to the community we serve.

The training covers:

  • Grant review processes and outcomes
  • Consumer review form criteria
  • Guidelines for scoring
  • Conduct and conflicts of interest

Attendees of the course will have an opportunity to practice scoring example consumer review forms and discuss their scoring rationale in a mock panel meeting.

To be eligible to attend the Consumer Review Panel training, consumers must have completed the Consumer in Research training, either in 2016 or in a previous year.

All costs are covered by Cancer Council NSW, including travel and accommodation if required.

Please note that places in the training session are limited. To apply to attend the training, please fill in the Expression of Interest form below and submit to research@nswcc.org.au. If you wish to attend both Consumer in Research and Consumer Review Panel training days, please indicate this on the Expression of Interest form (two forms are not required).

Research Training Expression of Interest Form 2016

Contact

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

Resources for consumers

Below are a number of resources for current consumers in addition to the manual received during the Consumer in Research training.

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