The Consumer Research Panel (CRP) plays an important role in ANZGOG’s research, both as patients and advisors.
The CRP is an ANZGOG committee that allows gynaecological cancer survivors and caregivers to offer input and advice to members, the Research Advisory Committee, Tumour Working Groups, and the Board of Directors.
Consumers have played a critical role in ANZGOG’s research review process for several years now, thanks to the inspiring and enthusiastic ambassadors who form the Consumer Research Panel (CRP).
“It’s the mechanism for advice and input from gynaecological cancer survivors and their carers to ANZGOG’s Research Advisory Committee. Its role is key to two-way effective communication between consumers, medics, and researchers.”
Wanda Lawson, Chair—Consumer Research Panel
ANZGOG believes that those who are affected by the research, have a say in what is researched and how that research is conducted.
This principle is what led to the establishment of the Consumer and Community Committee (CCC) in 2008, which eventually evolved into the CRP.
Consumer Research Panel members at the 2019 ANZGOG Annual Scientific Meeting
The CRP members provide a unique perspective to ANZGOG’s committees, representing the needs and expectations of gynaecological cancer consumers and helping to shape research development.
“Members of the CRP know what it’s like to be at the coal face of living with a gynaecological cancer diagnosis and undergo treatment. Applying the lived experience of the ‘end user’ to clinical trial development can improve the experience of participants and their carers.”
Gill Stannard, Consumer Research Panel member
The CRP has continued to focus on the improvement of lay summaries of ANZGOG trials and have participated in fact-finding workshops to understand how consumers access health information.
“The main purpose of the CRP is to represent and advocate at a national and state level for women diagnosed and treated with gynaecological cancer. The CRP provides an opportunity to review Patient Informed Consent Forms (PICF) to identify any gaps in trials, which may have a negative impact upon the women.”
Lesley McQuire, Consumer Research Panel member
Panel members are involved in undertaking research reviews and providing advice and consumer input for research proposals and concepts, trial protocols, and Patient Information and Consent Forms (PICF).
The CRP considers factors that may affect women that are participating in ANZGOG trials, such as the convenience of treatment, barriers to representative patient participation, the side effects of treatment, maintenance of confidentiality, anticipated treatment benefit, risks, and care and support during the trial process.
When asked, why they chose to get involved with the Consumer Research Panel, Wanda and Gill had the following to say:
“I have been an advocate for improvement in outcomes for women since my teen years in the late 1970’s. After my ovarian cancer diagnosis in 2004- it seemed an obvious progression to utilise some of the skills I had acquired over the years, to work for improvements for women diagnosed with gynaecological cancer.”
Wanda Lawson, Chair—Consumer Research
“I often joke that working as a consumer is the most productive thing I can do with my survivor guilt! It’s an honour to be able to use my lived experience to collaborate with researchers, to ultimately improve outcomes for women with gynaecological cancers.”
Gill Stannard, Consumer Research Panel member
Want to get involved in ANZGOG’s Consumer Research Panel?
If you would like to know more about the Consumer Research Panel, click here.
For further enquiries or to get involved, please contact ANZGOG Membership Officer, Heshani Nesfield hnesfield@anzgog.org.au
