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Consumer Engagement in Cancer Research

Consumers are people who have been affected by cancer - patients, survivors, carers, or close family members or friends of someone diagnosed with cancer or in some circumstances, members of the general community.

Including consumers in your research is an important requirement of many grants. It is also an essential part of the translational pipeline, and regardless of where you sit on the translational spectrum, should be a consideration when formulating your research plan.

 

Benefits of involving consumers

  • Consumer involvement has been shown to help make research more relevant to community needs
  • Involving consumers enhances transparency and accountability, by adding a different layer of independent review to peer review 
  • Many consumers have useful professional skills that can assist researchers in their project endeavours
  • Consumers may be able to see practical problems that researchers cannot; this added perspective ensures the research you conduct will be understood to benefit the real world in the short or long term
  • Increased consultation with end-users (e.g. patients) ensures research is as suitable to the community as possible
  • Consumer involvement in grant review leads to better informed funding decisions, ensuring research is targeted towards community needs
  • Involving consumers in research improves acceptance of research findings, in the community
  • Due to the number of consumer organisations established in recent years, consumers are well-placed to reduce the gap between researchers and the wider public

 

Sydney Catalyst has put together a list of resources to help you decide how to best involve consumers in your research. At the end of formulating your research or grant proposal, you should be able to answer the following key questions:

1. Will this research benefit others?

2. Will the benefits extend to all who need them?

3. How will this research be applied in practice?

 

Consumer Resources for Researchers

Cancer Australia | This website offers a range of resources fo researchers, managers and health professionals on involving consumers in research.

Consumer Health Forum of Australia | Real People, Real Data Toolkit

They have launched a new pilot program, Collaborative Pairs Australia, which aims to bring together health providers and consumers to develop and strengthen their capacity to work together to transform the health system. Is a national trial being implemented in Western Sydney and Western NSW and seeking applications from clinicians/and health service providers to complete a 5 day leadership program.

CHFA also have a handy search function to find Consumer and Community Organisations. 

Cancer Research UK | Patient Involvement Toolkit

Cancer Council NSW | This website provides information about involving consumers in your research, including how to find a consumer.

Cancer Council | Consumers in Research Training. While this course is designed for consumers interested in becoming involved in health and medical research, it may be of interest to researchers to gauge what consumers on advisory panels and committees will be looking for in your research work. The course is online and takes approx. 1 hour to complete.

Cancer Voices | Cancer Voices is a not-for-profit organisation that can nominate consumer representatives to committees and projects in areas which have potential impact for people affected by cancer. 

Health Issues Centre | Based in Melbourne, Victoria, HIC provides training for researchers and health care providers to advance consumer particiption in the health system.

NHMRC | NHMRC statement on consumer and community involvement in health and medical research

 

If you have suggestions for further education opportunities in this area please get in touch at sydneycatalyst@ctc.usyd.edu.au