Usha became a consumer representative in 2018
What motivated you to become a consumer representative?
My professional and personal cancer experience. I had worked in cancer research for many years prior to my diagnosis. When I was diagnosed and treated for head and neck cancer, everything just came home to me. It was a totally different perspective – the significance of all the work that goes on, be it in cancer prevention, screening and diagnosis, treatment, side effects, survivorship and psychosocial effects – whatever the scientific community (including myself) had worked on, everything made so much sense. I wanted to share this perspective and my dual experience puts me in this unique place – I almost feel it is my duty.
What research projects have you been involved with?
Input as a consumer representative into grant applications- 1. Quality of life for head and neck cancer patients, 2. Improving health outcomes for ATSI peoples with head and neck cancer, 3. A grant application on Vitamin D and prostate cancer and 4. A grant application on reducing the morbidity of head and neck cancer treatment.
Input into a scientific paper titled: “The future burden of head and neck cancers attributable to modifiable behaviours in Australia: a pooled cohort study.”
How have you been involved with cancer researchers?
Reading grant applications and providing input into the draft manuscript prior to publication.
I keep myself abreast with latest developments in cancer research, including by attending the Sydney Cancer Conference and breast cancer and cancer data related webinars. I interact with researchers formally and informally and share my perspective.
What do you enjoy the most about being involved with a research project?
I enjoy all aspects – learning about the research and also thinking about how the research addresses consumer needs, connecting the research to my own experience and those of others I have spoken to, and feeling good about using my knowledge and experience to advance cancer research.
What are some of the challenges that you have faced as a consumer rep?
I have to be mindful to not draw too much on my own personal narrative but to provide input which is more representative of the target group of the research topic.
Be mindful that I am providing input as a consumer not a researcher.
To keep my input simple, relevant and able to be addressed within the scope of the study.
How have you been able to help your researcher with their project?
I have provided input into draft grant applications and draft manuscripts. I have shared my cancer journey experience and brought that important consumer insight into researchers’ work. My treating team also does research on the side and I have always participated in their surveys and provided feedback. I have also advocated for ‘Head and Neck Cancer Australia’ and its activities.
What do you know now that you would like to have known at the beginning of your involvement with researchers?
The learning process from square one has been invaluable to me. You can’t have an early brief on this. It must be experienced progressively and exponentially. The more you become involved with different researchers, the more confident you are with your input.
If you could say one thing to a new consumer representatives, what would it be?
It is a rewarding experience. Go for it if you can. Make your voice heard, it is very important.
You will also learn a lot in the process and will be able to relate to a lot of the research work.
A final word ……
An important role of the consumer representative is to help make the research work even more relevant and relatable to the real-life experiences of cancer patients and society in general.
I would like to add that it is important to keep the research confidential especially from your treating team (unless the researchers would like you to discuss) until such time the research results are published.