When researchers and consumers work together, children’s cancer research is better focused on families’ needs

Consumer engagement is often a requirement of granting bodies for research these days, but it’s certainly not a box-ticking exercise if the commitment shown at this week’s Consumer Meet and Greet session was any indication.

An example of that commitment is Jack Kasses, one of Children’s Cancer Institute’s founders, who is himself the father of a daughter who in the 1970s contracted leukaemia and survived. It was the consumer experience of Jack and his colleague John Lough that led to the founding of the Institute 40 years ago.

For the past 10 years, Jack has served on a consumer engagement panel, reviewing and providing feedback on our grant applications to make sure our research is clear, understandable, applicable and appropriate to the needs of families facing cancer. The valuable partnership with people like Jack helps researchers conduct their research WITH the community, rather than FOR it.

Consumers having a say

Josi Demetriou, Consumer Engagement Coordinator, organised the Meet and Greet session this week. The evening event brought together about 12 parents and as many researchers. She said that Children’s Cancer Institute takes consumer engagement very seriously.

“We want to make sure that the voices of consumers – parents, carers, child cancer patients and survivors as well as close family members who have experienced childhood cancer – are heard. Involving consumers is critical to the success of the research undertaken here.

“Consumer interaction and engagement with our researchers is very important to enhancing our research efforts from the hospital bedside, to our lab bench, and back to the bedside,” she said.

Speakers at the Consumer Meet and Greet session included:

  • Executive Director Prof Michelle Haber who spoke about the role of consumer participation in research and why it’s so important
  • Prof Maria Kavallaris who talked about nanomedicine and its potential for safer drugs for children’s cancer as well as how her research has benefitted from the insights of parents
  • Dr Toby Trahair, a clinician with Kids Cancer Centre at Sydney Children’s Hospital, Randwick and a researcher at the Institute, talked about his experience treating children on his cancer ward and the change in treatments science offers
  • A dad, Aldo, talked about working with researcher Dr Orazio Vittorio providing a parent’s perspective on Orazio’s research into a natural compound that looks promising as a potential treatment
  • A/Prof Claire Wakefield of UNSW’s Behavioural Sciences Unit spoke about a range of projects that look at the psychosocial aspects of kids’ cancer, including helping young adult cancer survivors better manage their own health and peer support programs for bereaved parents. Claire is an Institute research collaborator. She and her team are based at, and supported by, the Kids Cancer Centre, Sydney Children’s Hospital, Randwick.

A theme that emerged from the presentations was the way researchers and parents can learn from each other and work together as true partners. To support this partnership, Josi says more Meets and Greet sessions are planned.

“It can be difficult for parents to get to things if their kids are in treatment but we understand that”, she said.

How to get on board

Josi is herself mum to a daughter with neuroblastoma. Her role as Consumer Engagement Coordinator includes supporting consumer engagement panels, updating consumers about research progress and being a contact point for parents and other consumers wanting to get involved.

To get involved or find out more about consumer engagement at Children’s Cancer Institute, contact Josi. And read a parent’s perspective in our donor newsletter LabNotes.

Photo: Dr Toby Trahair addresses parents at the Meet and Greet this week.



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