Maarit is a Senior Research Fellow at the University of New South Wales
Your area of cancer research
I work across all cancers developing and applying novel methods to evaluate preventable cancer burden and its determinants.
How long have you had consumer representatives involved with your cancer research?
I have had consumer representatives involved in my cancer research since 2018.
What is the most positive outcome for you of having a consumer representative work with you on your research?
I get to work with and gain perspective from the people I am hoping my research will benefit. It helps me make my research more relevant.
What are some of the challenges that you have faced working with a consumer representative?
The only challenges I have faced working with consumer representatives have been related to the research timelines which have sometimes been too challenging for the consumer representatives. This could have been avoided by better planning and earlier involvement of consumer representatives from my part which is something I have improved on as I find it very important to involve consumer representatives in my research and get their input.
How has the consumer rep been able to help you with your project?
Through their personal experiences the consumer representatives have been able to provide important direction for my research, for example areas of research to focus on that are important for the end users. They have also helped me to make sure that I am always using respectful language and acknowledging the unique circumstances of each cancer consumer while carrying out research at the population level.
What do you know now that you would like to have known at the beginning of your involvement with consumers?
To involve consumer representatives as early as possible in my research, including when applying for research funding, to optimally gain from the insight they have to offer.
If you could say one thing to a new researcher about working with consumers, what would it be?
Try to involve consumer representatives already in the early planning stages of your research and be open to shape your research based on their input as they have the lived experience of what is important.
If you could say one thing to a new consumer representative, what would it be?
Thank you for the incredibly important input and insight that you are providing for the cancer researchers. Thank you for your time!
A final word ……
Through my work with consumer representatives, I have met some of the loveliest people I have ever worked with. I have been really touched by their personal stories and their resilience when faced with such hardship. To turn that hardship into something so positive through their work with cancer researchers is truly admirable.