Much of the research in Australia is dependent upon receiving a grant. Consumers are playing an increasingly important role in labs to gain funding, and the Medical Research Future Fund has a stated objective to maximise opportunities for research translation by engaging with consumers.

Effective consumer engagement not only ensures our organisation’s work is grounded in a patient-centric philosophy, but tangibly assists researchers, clinicians and educators to better understand and tap into the lived experience of cancer for the benefit of all.

Watch the video to explore what value a consumer can add to a research program.

The video is presented by Anne McKenzie, Telethon Kids Institute with Anne Byrne, Peter MacCallum Cancer Centre and Stephen Mieruszynski, Walter and Eliza Hall Institute.

More than 75% of consumers want to have a say in research.

Watch the video to explore what consumers can get from research engagement.

The video is presented by Anne McKenzie, Telethon Kids Institute with Anne Byrne, Peter MacCallum Cancer Centre and Stephen Mieruszynski, Walter and Eliza Hall Institute.

Providing an environment to build integrity and credibility enables people from different perspectives to contribute with a shared focus. Some ways of achieving this can be through feedback and encouragement, ensuring inclusion through good communication, making background knowledge or insights available to all, and clear language and explanations where possible.

Watch the video to explore tips and strategies for research engagement with consumers.

The video is presented by Anne McKenzie, Telethon Kids Institute with Anne Byrne, Peter MacCallum Cancer Centre and Stephen Mieruszynski, Walter and Eliza Hall Institute.

VCCC Alliance consumer engagement in research Top 10 tips for researchers 

Download the top ten tips here 

Sophy Athan discusses the value of consumers

Sophy has first-hand experience in assisting a research team to secure funding from the Movember Prostate Cancer Research Alliance.

Sophy Athan
VCCC Chair, Cancer Community Advisory Committee

There has been a shift in terms of involving consumers. Nowadays, if you don’t include consumers, community and patient perspectives then the grant is deficient in terms of having heard that voice and taken that into account. It is crucial to take into account the lived experience, the impacts and how those experiences might affect the development of the research project and its potential translation into delivery of service.

This is not just one voice. It is important for researchers to think carefully about the research going forward and how you would engage with the consumer cohort. Research needs to have consumers involved not just in the process, but throughout the development to ensure the outcomes benefit consumers and the community.

The value of consumers and researchers together

Consumer participation can make the research richer – more accountable, more relevant and hopefully feed into better practice standards.

If the research is about an impact for a particular group, researchers need to do what it takes to engage authentically with that group to ensure subtle and more obvious impacts are not missed out.

Transparency and accountability in research

We, consumers and the general public, need to have a better understanding around research in general. Once people understand the process, standards, ethics, governance and benefits, then they are more likely to participate. Most people don’t really grasp the connection between research and the deliverables within a hospital.

Community engagement needs to be done in a way that is accessible and relevant, such as the language used, and must provide dialogue and establish processes between consumers, community and researchers.

Researchers may also have their own anxiety about working with consumers. Will they be understood? Will it cause me some issues?  We need to have the dialogue and build a relationship.

Don’t assume, always check

Consumers participating in research must be adequately supported around the basics such as transport, access and never be out of pocket.

We need familiarisation, such as meeting the people involved in the research, getting to know the team, understanding the research goals, checking in informally and formally if we are to ensure that everyone is heard.

At times it is difficult for consumers to talk about experiences as they are deep and personal, but there is also an altruistic motivation to participate in research which encourages us to put our hand up and become involved.

The final outcome may not help me personally, but it may help someone else.

The Consumer Engagement Toolkit was developed by the VCCC Alliance Cancer Consumer Advisory Committee (CCAC) with consumers and alliance members who identified a need for a consumer engagement strategy, model and guiding documents to support effective engagement.

The Toolkit provides real-life examples of consumer engagement and associated resources for all to use. Templates can be downloaded, branded and customised for your own purpose.

To access the Consumer Engagement Toolkit click here