My name is Sandie Foreman and I have Mesothelioma. In March 2016 I went to my GP after experiencing what felt like a pinched nerve in my abdomen.
What motivated you to become a consumer representative?
My experience with having cancer and wanting to contribute in some way
to research to find cures and early detection. I was diagnosed with Pleural Mesothelioma in 2016 and underwent 5 rounds of chemo, a major surgery and radiation therapy. If it wasn’t for researchers dedicating their time to finding treatments for cancer I wouldn’t be here today so if there is anything I can do to help them progress their research I’ll do it.
What research projects have you been involved with?
Managing and enhancing family carer involvement online program – CeMPED, Sydney University
Consumer Advisory Group – Improving cultural and linguistic diverse cancer healthcare- UNSW -(ongoing and will continue for approx. 12 more months)
Fingerprint RT leaves on cells – University of Tasmania
Currently I am also involved with the Laboratory of Immuno-Psychiatry at Neuroscience Research Australia (NeuRA) investigating the effects of cancer and chemotherapy on brain cells.
How have you been involved with cancer researchers?
Attending meetings, both face to face and via Zoom. Reading grant applications and giving feedback to researchers. I have even been given tours of the researcher’s facilities.
What do you enjoy the most about being involved with a research project?
It’s always interesting to learn about new research and hopefully my input helps in some way
What are some of the challenges that you have faced as a consumer rep?
I’m not used to being involved in committees so the protocols and terminology can be confusing but I’m getting there and there’s lots of support.
How have you been able to help your researcher with their project?
They are always very appreciative of knowing the consumers’ point of view and how their research can benefit the community; it puts a human face to what they do. I think sometimes they can be so close to a project that it’s easy to forget who is going to benefit and in what way.
For example, Adam offered to give me a tour of the labs and during our discussions about his research, he said I had raised issues he hadn’t thought of and, as a result, he was going to change his research and asked if I would like to come back and talk to the whole team. This is valuable consumer input.
What do you know now that you would like to have known at the beginning of your involvement with researchers?
Some projects are quite short and some can run for a couple of years or may branch off into different areas that they identify a need and you can choose to be involved in new research that you helped identify a need, very fulfilling!
If you could say one thing to a new consumer representatives, what would it be?
Communicate honestly with the researcher. If you think the application is not explained in clear non-technical terms, say so. This is all about getting the best result for the researcher. It’s also very interesting to see the process researchers go through.
A final word ……
Just enjoy the process.