Consumer engagement

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Andrea:

Six years ago I was diagnosed with colorectal cancer, and had an operation, which meant that I needed to have a colostomy and have a colostomy bag. I had six months of chemo and I concluded all my treatment and have come through the other side with a permanent colostomy.

I thought I had good background to help me contribute to the work of IMPACCT. Generally, I'm asked to read through a research application for funding and comment from a consumer's point of view on the research techniques and methods that are being proposed and then comment as to how that would impact on a patient who may be taking part and participating in that study.

If it's successful, I follow that through as a consumer advocate on all the work that is done right through to the end, to a paper being published or presented at a conference.

I'm quite happy to talk about the work that IMPACCT does and the valuable contribution that consumers can make with those personal experiences. It's just not enough to do the scientific research, academic or even clinically based.

I think that it's important that clinicians understand from the patient's perspective. And as a consumer advocate, I'm able to bring that understanding into the research that's undertaken in IMPACCT.

What is a consumer representative?

Healthcare consumers are people who have experience of one or more health conditions as patients or caregivers. Healthcare consumer representatives undertake work through advocacy and/or contribution to healthcare research. 

Why are consumer voices important in research?

Consumers provide insights from the patient and/or carer perspective that aid the work of researchers and clinicians. Consumer insights ensure that the physical and emotional wellbeing of patients and caregivers are considered in research and when implementing research findings into practice.

What do IMPACCT consumer representatives do?

IMPACCT consumer representatives contribute to the quality, relevance and effectiveness of our research. They do this through membership of the IMPACCT Consumer Advisory Group (CAG). 

IMPACCT consumer representatives:

• are involved in the design, implementation, evaluation and dissemination of research projects and clinical trials
• provide general guidance to inform our strategic direction
• give feedback on current practices in healthcare to identify what works and what needs improvement
•  contribute to the development of curriculum content in the postgraduate palliative care courses

Who are the IMPACCT consumer representatives?

IMPACCT consumers come from a range of backgrounds and have a range of experiences as patients or caregivers. 

CAG members represent diverse populations including Aboriginal and Torres Strait Islander communities and culturally and linguistically diverse (CALD) communities.

They understand healthcare services in metropolitan, regional, rural and remote Australia. This strengthens our research and helps us to develop culturally sensitive projects and protocols.

This diversity strengthens IMPACCT’s research initiatives and develops culturally sensitive projects and protocols. 

Read our Consumer stories.

Can I be an IMPACCT consumer representative?

Please go to the Consumer Advisory Group page to find out who we are looking for and complete an online expression of interest form.

Questions?

Email your questions about becoming an IMPACCT consumer representative to Vanessa Yenson, IMPACCT CAG Coordinator, at IMPACCT@uts.edu.au.