Consumer Network

All research programs through CRE-RESPOND are guided by consumer and community involvement. Through funding from The University of Queensland CCI Kickstarter Grant scheme, expert consumer investigators are now integrated into core business. Each investigator contributes specific expertise that is necessary to ensure the relevance and translation of research, for the benefit of the broader community.

Join the Consumer Advisory Steering Committee

You can contribute your expertise by joining the Consumer Advisory Steering Committee for the PhaRmAcoGenoMics for better treatment of fungAl infecTions In Cancer (PRAGMATIC trial).

The PRAGMATIC trial aims to understand how we can better provide treatment to prevent severe infections in people being treated for blood cancers. This trial is funded by an Australian Government Medical Research Future Fund grant.

We need your voice to ensure that consumer perspectives are at the heart of this important research. We are forming a consumer advisory steering committee to provide ongoing strategic advice during and after the PRAGMATIC trial to ensure that it provides meaningful outcomes for patients, their families and the community.

Read the consumer representative position description: Position Statement (PDF)

Consumer network members

Impact stories

Jacinta Smith, Expert Consumer Researcher:

In 2019 I was diagnosed with Acute Myeloid Leukaemia with the FLT3 and NPM1 mutations. My journey took me through induction and consolidation rounds of chemotherapy as well as a Bone Marrow Transplant.
During my first consolidation chemotherapy I contracted an infection and spent 22 days on full life support in ICU due to sepsis and subsequent total organ failure. Because of this I spent an extended time in a rehabilitation unit, as my time in a comatose state left me totally deconditioned. It was critical that I have a BMT as soon as possible due to the high incidence of relapse, however while in this deconditioned state I was too weak to be able to survive the transplant. I have remained in remission, and I am fit and healthy.
Since 2020 I have been able to use my lived experience to be an advocate for consumers, carers and their families in different ways. I have been involved in many committees, working groups and several research projects.
I find it truly rewarding to be able to give the consumer’s perspective to research and studies which aim to improve experiences and outcomes for consumers. I am proud to be involved with CRE RESPOND research and believe that it is imperative to have the consumer perspective on these vital projects. As a consumer, I can give insight on the practicalities and feasibility of what is required of patients participating in clinical trials.
I am passionate about using my experience to assist in research projects that can make a difference for other’s healthcare journeys. I am a Consumer Expert for the PRAGMATIC study which aims to ensure that those receiving treatment for a blood cancer will have the optimal care for preventing and treating infections.