Patient representatives and next gen researchers unite to tackle disease

A new initiative from the Department of Clinical Pathology is bringing Honours students and consumer representatives together to highlight the importance of consumer engagement and why it is vital at all levels of research.

Consumer enagement UniMelb Department of Clinical Pathology

Even social distancing measures couldn’t stop the 27 students and consumer advocates coming together for two panel discussions, swiftly moved from in-person to hosted online.

Consumer engagement brings together consumer representatives and those working to improve outcomes for patients – such as researchers or health service providers – to develop meaningful relationships and actively collaborate on their shared focus.

Like researchers, consumer representatives are driven by their passion – to improve the lives of those affected by diseases such as cancer and Parkinson’s. Consumer advocates are patients, carers or family members, who have in various ways been affected in their lives and want to give back and use the experience to improve outcomes.

Professor Frederic Hollande, Deputy Head of the Department of Clinical Pathology and group lead in the University of Melbourne Centre for Cancer Research, is leading this initiative. He said that the contribution made by consumers to the research cycle remains too often overlooked, and that this program is aiming to inform students about this issue so that they engage as early as possible in their developing careers.

“Introducing students to two-way discussions with the broader community – in this case, with consumer representatives – is the best way to change the culture of research engagement, and will enable long-term improvements in research quality, healthcare provision and patient outcomes.

“The success of these sessions demonstrates that thanks to the goodwill and passion of the consumers, consumer engagement specialists and academics, we can quickly adapt to changes like the current Work-from-Home restrictions due to the coronavirus pandemic to continue to offer great learning opportunities to our students.”

Blake Bowen, an honours student with the Department of Clinical Pathology and University of Melbourne Centre for Cancer Research, found it motivational to hear from consumer representatives and an important reminder that his research is aiming to help real people navigating cancer.

“These sessions demonstrated how consumer advocacy programs can help shape research projects to have greater direct benefit on the lives of patients and their families.

“I think that as my career in research progresses, I will certainly search for opportunities to involve consumers, as they can provide a unique perspective that can genuinely help to maximise the impact of research projects.

“As a result of these sessions, I have also realised how consumer input can be instrumental in ensuring that research findings are communicated effectively to the public, which is an important facet of research.”

Robin Wagner is undertaking a Master of Biomedical Sciences at the University of Melbourne, and said that the discussion gave her a deep respect for consumer representatives, using their own experiences to improve the care of future consumers

“I’ve learnt that consumer engagement plays an important role in holding biomedical researchers to account. Research is not merely an intellectual exercise, but an activity undertaken for the benefit of real people.

“In my career I hope that collaboration with consumers directs my research to remain responsive to the needs of the real people affected by cancer.

“The discussion has inspired me to participate in consumer engagement as soon as possible, and in the long term I hope I can collaborate directly with consumers to incorporate their voices into my research.”

As well as hosting consumer representatives, Dr Joanne Britto, Consumer Engagement Manager at the Victorian Comprehensive Cancer Centre (VCCC), presented the VCCC's Consumer Engagement Toolkit, which provides real-life examples of consumer engagement and associated resources for researchers and organisations.

Dr Britto said that consumers have the expertise of a lived experience, a unique perspective not often represented in research teams.

“We know that positive outcomes are achieved with active dialogue and respect, and these events were a good opportunity for the students to hear about the benefits of consumer engagement early in their research careers.”