Patient Voices workshop 2023
For the fourth consecutive year Professor Fred Hollande hosted the Patient Voice workshop linking students undertaking Honours in Pathology and Clinical Pathology with patients with a lived experience of cancer.
The event linked students undertaking Honours in Clinical Pathology with four health consumers — Natalie, Kathy, Paul and George — each with a different lived experience of cancer. Students were able to gain valuable insight into a patient’s experience of the health system and talk about ways to break down the barriers that can prevent researchers from seeking input from consumers.
The workshop covered the practicalities of where to find and engage with consumers along with several key takeaways on the value consumer engagement can bring to research, including: 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 workshop also stressed the added value brought by diverse consumer perspectives — patients have varied experiences which allow them to bring a completely different point of view. It helps researchers step back and have a more holistic understanding of their work and how it translates to everyday practice.
The event has been organised annually since 2020 and continues to build momentum, with a positive reception by both students and consumers.
“I think I failed to realise that consumers and patients are the other side of the same coin,” said Honours student Kathy Dominic. “When you’re in the lab, it’s very hard to see.”
For many students and early researchers, the concept of involving consumers or patients in research, particularly at the outset of a study, was a revelation.
Fellow Honours student Zahraa Hameed said “I haven’t met patients with cancer before. Hearing from the perspective of these patients who have benefitted from research was really rewarding.”
“I wasn’t even aware there were consumer committees and organisations like WEHI and Peter Mac. So learning about that was eye-opening and made me really appreciate the effort that’s been put into making the research we do translatable to benefit the public and meet their expectations.”
People with a personal connection to cancer, including friends and family members of patients impacted by treatment, also bring a wealth of knowledge to the table. Their involvement stands to strengthen research efforts in a multitude of ways. “I didn’t realise how big the consumer network was for researchers to engage with them and ask for their advice, experience, and opinions,” said Ruby Johnstone. “They can be involved in grant writing and research, question development and clinical trial design. So they play a huge role that I didn’t really understand until this workshop.”
Professor Hollande who also leads the UMCCR Tumour Heterogeneity in Metastatic Cancer group emphasised the importance of working hand-in-hand with consumers to achieve 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.
“One aspect I really enjoy in this workshop is how consumers and students are effectively learning together, with both groups always reporting how the discussions have pushed them to self-reflect on how they approach their respective roles.”
"I think it is essential to recognise that consumers, who have the most at stake in how well our healthcare system performs, should have a voice in discussing the evolution of research and medical activities.”
“If we want to instigate a culture change in the way we interact with patients, carers and other users of the healthcare system, we need to introduce our students as early as possible to this notion of consumers as partners, collaborators towards a common goal.”