Senior Research Fellow and Group Leader – Laboratory of ImmunoPsychiatry Neuroscience Research Australia (NeuRA) and University of New South Wales
Your area of cancer research
Cancer-related cognitive impairment (“chemobrain”)
Sleep and circadian rhythm influences on cancer-induced inflammation
How long have you had consumer representatives involved with your cancer research?
I have had consumer representatives involved in my research sporadically since 2015. Although, my lab’s relationship with Sandie which began this year has been the closest so far (despite COVID setbacks and delays in meeting) and I hope that relationship continues to grow
What is the most positive outcome for you of having a consumer representative work with you on your research?
My lab is predominantly focused on neurobiological outcomes in response to cancer and cancer treatment. This means we often use animal models of cancer and cancer treatment to identify how the brain responds, and assess biomarkers in human patient samples. Unfortunately, that means we don’t actually meet face-to-face with cancer patients and survivors to hear their stories. Connecting Sandie’s real life experience with our research focuses (and adjusting those based on Sandie’s lived experience or advice) has been immensely helpful to me, my staff and especially my students. When my students hit a slump or have a particularly challenging experiment, we chat about Sandie’s experience and the bigger picture of why we are doing the research. It helps change their immediate perspective from cells on a slide to function and quality of life for thousands of Australians experiencing cognitive side-effects of cancer.
What are some of the challenges that you have faced working with a consumer representative?
Because much of our research involves animal models, cellular and molecular biology, it can be challenging to find a common language around the research details. But Sandie has been patient with us. Generally, we have been able translate Sandie’s description of her and others’ experiences regarding daily life into their meaning regarding molecular pathways and neural networks to investigate.
How has the consumer rep been able to help you with your project?
Our primary focus has been on the impact of cancer and chemotherapy on memory and concentration. From hearing Sandie’s story, we now investigate components of rule-based learning (like following complex instructions) and the impact of stress on the brain. This has led us to make new discoveries regarding the cognitive domains vulnerable to cancer. The examination of the impact of stress with cancer and cancer treatment, has become an entirely new avenue of research for us. This year we mapped activation of 3 major cell types throughout stress neurocircuits and discovered what we think is the cellular culprit in cancer-related cognitive impairment and stress disorders. We submitted grant applications this year based on trying to remediate overactivation of these brain cells as a potential treatment but we were unsuccessful. We will keep trying!
Sandie has also been helpful reviewing grants and helping with lay summaries.
What do you know now that you would like to have known at the beginning of your involvement with consumers?
Consumer involvement in studies that involve molecular science or are not conducted in humans felt challenging beforehand. I now know it is possible and can be very beneficial.
If you could say one thing to a new researcher, what would it be?
If you could say one thing to a new consumer representative, what would it be?
Talk about your experience with the researcher as much as possible, no matter if you think it is important or not. Some things only became apparent for us as researcher the more Sandie opened about her and others’ experience.