Consumer Reference Panel members (left to right): John Stubbs (chair), Kate Griggs, Mohammad Al-Khafaji, Merryn Carter, Robina Yasmin.
A seat at the table
'The CRP is a very important new seat at the table for consumers,’ says panel Chair John Stubbs. ‘We can directly advise the CEO how to strengthen consumer involvement in implementing the MRFF.’
Many of the new CRP members are experienced consumer representatives. However, on the CRP they act as individuals.
‘This means we can speak for the whole community, not just on issues of concern to particular organizations,’ John explains.
Guiding principles on consumer involvement in research funded by the MRFF
A high priority for John is developing new guiding principles to promote consumer involvement in research funded by the MRFF.
‘When people who experience medical treatment as patients walk hand in hand with researchers that helps improve outcomes,’ John says.
CRP member Merryn Carter agrees. For example, consumers improve medical research by focussing on how to improve a patient’s quality of life, not just their length of life. Consumers can also balance the benefits and costs of competing research proposals.
‘That’s why the CRP wants health and medical research to involve consumers across the whole journey from idea to implementation,’ Merryn says.
Reflecting community health needs
CRP member Kate Griggs wants medical research to reflect community health needs. ‘I work with people who can’t afford to access basic health services. We want tax dollars to be used in a way that will most benefit people experiencing poorer health outcomes and quality of life.’
‘It’s about health democracy’, she emphasises. ‘We need to lift the patient’s voice. First Nations controlled health organizations do this well by putting their Elders at the head of their governance. We can all learn from this approach.’
A diversity of views
‘The latest census shows that more than half of Australians were either born overseas or have a parent who migrated 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 produce valuable data on different social and physiological determinants of health.
For example, in a pandemic such as COVID-19, the government needs adequate data to plan and communicate with CALD groups.
Mohammad hopes the fact that the CRP can raise consumer issues and provide advice on how funding decisions are made will give CALD consumers more confidence that medical research will benefit all Australians.
‘This is important,’ says CRP member Robina Yasmin. ‘Because people from CALD communities don’t always seek help from health services. Sometimes you have to go to the doorsteps of the consumers to find out what they need,’ Robina says. ‘We have to improve the health of everyone in Australia.’
We are looking forward to working with this engaged group of consumers to assist us meet the MRFF key objective to improve the health and wellbeing of all Australians.
Read about the Consumer Reference Panel members and terms of reference.
Read more about MRFF governance.