Consumer Priorities for the Fund for the Future of Medical Research
August 2, 2022
Consumer Reference Panel Members (L to R): John Stubbs (Chair), Kate Griggs, Mohammad Al-Khafaji, Merryn Carter, Robina Yasmin.
A seat at the table
“CRP is a very important new seat at the consumer table,” says panel chair John Stubbs. “We can advise the CEO directly on how to enhance consumer participation in the implementation of the MRFF.”
Many of the new CRP members are experienced consumer representatives. However, on the CRP, they act as individuals.
“It means we can speak on behalf of the whole community, not just on issues of interest to particular organizations,” says John.
Guiding Principles on Consumer Involvement in MRFF-Funded Research
A top priority for John is to develop new guidelines to promote consumer participation in MRFF-funded research.
“When people undergoing medical treatment as patients walk hand-in-hand with researchers, it helps improve outcomes,” says John.
CRP member Merryn Carter agrees. For example, consumers are improving medical research by focusing on how to improve a patient’s quality of life, not just their lifespan. Consumers can also balance the benefits and costs of competing search proposals.
“That’s why CRP wants medical and health research to engage consumers every step of the way, from idea to implementation,” says Merryn.
Reflect community health needs
CRP member Kate Griggs wants medical research to reflect the health needs of the community. “I work with people who cannot afford basic health services. We want taxpayers’ money to be used in the way that will most benefit people with poorer health and quality of life.
“It is about health democracy”, she underlines. “We need to raise the voice of the patient. First Nations-controlled health organizations do this well by placing their Elders in the lead of their governance. We can all learn from this approach.
A diversity of points of view
“The latest census shows that more than half of Australians were either born overseas or have a parent who emigrated to this country,” says CRP member Mohammad Al-Khafaji.
Mohammad wants researchers to include people from culturally and linguistically diverse (CALD) communities in study samples. This will generate valuable data on various social and physiological determinants of health.
For example, during a pandemic such as COVID-19, the government needs adequate data to plan and communicate with CALD groups.
Mohammad hopes that the fact that CRP can raise consumer issues and provide advice on how funding decisions are made will give CALD consumers greater confidence that medical research will benefit all Australians.
“It’s important,” says CRP member Robina Yasmin. “Because people in CALD communities don’t always seek help from health services. Sometimes you have to go to consumers’ doorsteps to find out what they need,” says Robina. “We need to improve the health of everyone in Australia.”
We look forward to working with this group of committed consumers to help us achieve MRFF’s key goal of improving the health and well-being of all Australians.
Learn more about the members of the Consumer Reference Panel and their terms of reference.
Learn more about the governance of the MRFF.