Joining the dots between research and patient impact
An educational program is connecting honours students with patients to understand the importance of career-long relationships between researchers, their research, and those who are set to benefit from it.
Consumer engagement is becoming a mainstay of research, particularly in the health and medical space.
Honours coordinators of the Department of Clinical Pathology, in collaboration with colleagues at the Department of Microbiology and Immunology, are educating students early to understand the benefits of early and ongoing consumer engagement in research.
Professor Frédéric Hollande, Deputy Head and Academic Program Coordinator at the Department of Clinical Pathology and initiator of the event, said that the second annual educational event provided Honours students with a first step to understanding and contributing to these important discussions around consumer engagement.
“We are all consumers at least once in our lives – either as patients or carers, supporting loved ones through the health system,” he said.
“By understanding the important perspectives of consumers early in their research career, we aim to ensure that future scientists and actors in the health sector realise that consumer engagement is key.”
What is consumer engagement?
In biomedical research, ‘consumers’ are defined as past, present or potential users of a health service, such as patients, carers, families, and support people.
Dr Joanne Britto, Manager of Consumer Involvement at the Victorian Comprehensive Cancer Centre, said that ‘Consumer engagement’ refers to an approach of developing meaningful relationships with a shared focus.
“It is supported by trust and mutual respect, a commitment by all involved and active two-way dialogue. The term consumer engagement indicates action that is more than simply taking part,” she said.
“Consumers bring their expertise of firsthand knowledge, a different point of view, and can use this to enhance research questions or improve relevance.”
Consumers bring their unique perspectives
This year, three consumers share their experiences, expertise and passion for consumer involvement in research with our Honours student cohort.
Emma was diagnosed with colorectal cancer at 38. With no known cause, she undertook genetic testing in 2018 and was referred to Professor Dan Buchanan’s Colorectal Oncogenomics Lab, initially as a study participant and then went on to become a consumer representative within the lab.
“I want to be a consumer representative to contribute what I can, while I can,” she said.
Natalie is a researcher in a drug discovery program and brings the dual perspective of research and consumer to Professor Buchanan’s lab.
“Sometimes we forget about the consumer in research, but actually it is so important to bring it back to why you are doing what you are doing,” she said.
“As a researcher, understanding the real question and the real problem helps to drive my research, and invigorates my enthusiasm to do better and strive towards the goals that make a difference.”
“As a consumer, it helps me answer the questions that I have about my disease and experience and enables me to feel like I am contributing back in a proactive manner – not just having a negative experience.”
Paul was diagnosed with non-Hodgkin’s lymphoma 16 years ago – a disease with a typical survival rate of four to five years.
“I have seen the importance of a consumer or somebody who sees things with a different lens,” he said.
“We can use our voices and unique backgrounds to better communicate, to break down research barriers, and ensure that the consumer is central to everything we do.”
So, what were some of the key takeaways for the students this year?
The importance of mutual respect.
Relationships between consumers and researchers must be built on a foundation of mutual respect. This means an understanding of what both parties are trying to achieve, a shared vision or goal, and high esteem for each other’s unique perspectives and expertise.
Communication is key.
Consumers can assist researchers to communicate their research in more precise, simple and accessible manner for the general public. This has important benefits for various types of communication channels in research, including for funding applications, which require lay descriptions of complex topics, that consumers can help to develop.
Building rapport, between researchers and consumers is also vital, to ensure effective communication and a supportive and collaborative environment where people are empowered to share their ideas, ultimately providing benefits for all.
Consumers should be involved from the beginning.
Consumer engagement is important to keep researchers focused on an end goal, to ultimately provide benefit to patients. Early discussions between consumers and researchers can have huge impact on the scope of a project’s development and outcomes.
This also contributes to the important rapport building and creation of mutual respect between researchers and consumers, to ensure that consumer involvement is not tokenistic.
All areas of research can benefit from consumer engagement.
All biomedical research has a benefit to consumers, so all types of research can benefit from consumer engagement.
And diverse consumer voices are important. Research projects aim to include people from different backgrounds and specialties to strengthen the research, and consumers are one of these important perspectives.
The consumer perspective is unique to those who have experienced it, and it cannot be learnt through literature.
Creating a culture of lifelong collaboration
Student participant Sieu Thinh Tang said that the experience of talking to consumers was “the most exciting thing – to understand what the research enables, and to help improve people’s lives thanks to the research.”
In closing, Dr Britto said that consumers and community are central to our research – which is easy to be distracted from when implementing the science.
“We need to actively engage consumers, show respect and acknowledge diversity, think about what you are both trying to achieve, and act in an ethical, responsible, honest, and transparent manner.
“This is a working relationship that is no different to how you engage with your fellow students, collaborators, lecturers and tutors.”
Professor Hollande said that events with students such as this will have an ongoing impact.
“By helping students to feel comfortable with consumer engagement and understand its importance early in their career, we are ensuring that the next generation of researchers will engage consumers well, right from the beginning – with huge positive benefits for both researchers and patients.”