Professor Susan Ramus is an ovarian cancer researcher within the School of Women’s and Children’s Health, and a member of the Adult Cancer Program in the Lowy Cancer Research Centre. She leads the Molecular Oncology Group.
How long have you had consumer reps involved with your cancer research?
I have had Cancer Voices NSW consumer reps involved in my research since I returned to Australia in 2016. Before that, I had consumers involved with my work from 2011, while I was in the USA. We also have international consumers involved in all of our international projects.
What is the most positive outcome for you of having a consumer rep work with you on your research?
It has been very motivating to have consumers working with us on projects. It has been wonderful to get to know them and to have a better understanding of the challenges faced by women with ovarian cancer and where our research can be of the most benefit.
What are some of the challenges that you have faced working with a consumer rep?
Time is always the most challenging aspect. Trying to balance giving the consumers enough time to provide feedback on grant applications, and not having enough time to do the applications much before the deadline.
How has the consumer rep been able to help you with your project?
Providing feedback about what aspects of a project are of most interest to consumers and their ideas of interesting projects. Discussion of what types of testing might be acceptable to patients. Help with the lay description of the research plan for grant applications. Communication of the results from a project to cancer patient groups.
What do you know now that you would like to have known at the beginning of your involvement with consumers?
How often they would like to be contacted about the progress of projects, and how much time they have available to help.
If you could say one thing to a new researcher about working with consumers, what would it be?
It will make you a better researcher. You will understand what people with cancer have experienced and what projects you can do that will help. It will also help you to learn to explain your work in a clearer way.
If you could say one thing to a new consumer representative, what would it be?
We really appreciate your time and your interest in our work. We want to hear your thoughts about the project and the direction of our research and any ideas you want to share. It is very exciting to be able to work with someone who is interested in what we are doing.
A final word ……
Consumers sharing their experience has been deeply moving, and is very motivating to PhD students and staff in the team, as they meet people who may be helped by the work they are doing.