Starting a culture of consumer engagement early

For three years, Professor Fred Hollande has brought together honours students and health consumers with the aim of providing students with a working knowledge of consumer engagement from the very beginning of their research career.

In biomedical research, ‘consumers’ are defined as past, present or potential users of a health service, such as patients, carers, families, and support people. Consumer engagement is becoming a mainstay of research, particularly in the health and medical space.

This year, students undertaking Honours in Pathology and Clinical Pathology engaged with three health consumers—Natalie, Paul and Nicole—each with experience of cancer; Dr Kristi Milley, National Manager of the Primary Care Collaborative Cancer Clinical Trials Group (PC4) who manages consumer engagement for the group; and Dr Joanne Britto, Manager of Consumer Involvement at the VCCC Alliance.

The event provided students with their first insight into ‘consumer engagement’ as a concept and started breaking down the barriers that many researchers usually face later in their career.

As well as the more practical basics of where to find and engage with consumers, the students had several key takeaways on the value that consumer engagement can bring to research:

• The importance of building respectful relationships and rapport – talking to consumers as a person, and collaborator on research, rather than just seeing the disease.
• The added value brought by consumer perspectives – consumers come at research projects with a completely different point of view, which can help researchers step back and have a more holistic understanding of their work.
• A significant contribution to health outcomes and literacy – researchers can play a role in improving the health literacy of consumers by engaging them in multidisciplinary teams, as part of their own care team.
• Clinical links – consumer can provide information vital for clinical translation and can link researchers with clinicians.

Like previous iterations of this workshop in 2020 and 2021, this year’s event was very well received by both students and consumers.

Honours student Filip said that the session was eye opening, as there are few opportunities to speak directly to consumers.

"My work is very lab centric, and a lot of the time you do get caught up in the next experiment, so you lose track of that the work is in relation to a real patient, so it was nice to make that connection,” he said.

“It is important to communicate more with consumers because … as we learn more and converse with consumers more, we can integrate their expertise directly into our research.”

Paul (Consumer representative) said that it was common that the students hadn’t talked to a consumer before.

“Whenever you are in groups and meeting people for the first time there is a shyness, so it is about building that rapport, and by the end of the workshops people are happy to talk—it is really an analogy of how researchers and consumers meet for the first time,” he said.

“The culture starts working alongside consumers, so you go away with that knowledge here, slowly changing the culture so that you are leading the way in creating that harmony between researchers, clinicians and consumers.”

Consumer representative Nicole said that “human-ness” plays an important role in the science, and scientists’ understanding of their role as part of medical teams.

“When we are in institutions and university mode, studying, there are some artificial boundaries that are created – semantics that take over to such an extent that you can feel like you are scientists. But researchers all collectively work in medicine, just as patients do. And that as a part of a team in medicine, we are all working towards better outcomes for patients,” she said.

Honours student Aditi said that the session was very informative and helped to provide perspective for research. “We have never considered consumers when we were planning our experiments, so the fact that we got to engage with them and really understand, to talk to them in person, is a really different experience,” she said.

“I think that most of your research should be influenced to a decent extent by the consumers’ needs or desires because they are the ones that be affected by the end product—their consensus and influence is very important.”

Researcher and consumer representative, Natalie, was impressed with how quickly the students understood the ideas of consumer engagement.

“I really appreciated their grasp of the impact of consumer engagement long term, not just in this one honour’s year but in the way they were thinking about their research into the future and how they wanted to conduct themselves as scientists,” she said.

“I certainly feel that workshops like this are important, as a researcher myself, and I wish that I had known half of what I know now earlier on. It improves my quality of science, outlook on life – it is absolutely invaluable.”

Professor Hollande said that it is essential for students to meet consumers, understand what consumer engagement means, and how working hand-in-hand with consumers can lead to better health outcomes.

“As researchers nowadays we have to interact with consumers on a regular basis, and they really should be at the centre of what we try to do in research,” he said.

“As an educator, I've always thought that we are not introducing our students early enough to the consumer engagement concept, so I initiated these workshops at the honours level as a way to introduce them to this idea that consumers are just part of a research team – that they are a contributor to health and medical research programs.”

“You could see that the students were captured straight away when our first consumer started talking about their experience— capturing their attention is a great asset that we should be using to develop extra skills and integrate as part of their research culture,” said Professor Hollande.