Consumers who are involved in health research would receive a standard hourly rate of remuneration, under a framework developed by the National Centre for Epidemiology and Population Health at the Australian National University (ANU) in partnership with Research Australia.
Recognising Consumers' Contributions to Health Research was co-designed with health consumers and representatives of universities, a local health district, and not for-profit and consumer-led bodies.
Associate Professor Jane Desborough said individuals with lived experience of specific health conditions make important contributions to high-quality health research, for example through being involved in research teams, on steering groups or by participating in focus groups and interviews.
"While consumer engagement is now widely expected in Australian health research, approaches to recognising and rewarding those contributions have not kept pace," Associate Professor Desborough said.
"Some consumers are paid for their time, some are reimbursed for out-of-pocket expenses, and others receive little more than a thank you".
Supervised by Associate Professor Desborough, Mingming Zhou conducted the research as part of her PhD at ANU, focused on the development of resources to support consumer engagement in research about chronic conditions."
"The framework was designed to ensure that consumer contributions to research are fairly recognised, valued and supported into the future", Zhou said.
It includes guidance on remuneration rates, with $50 per hour to be paid to consumers participating in research activities and their out-of-pocket costs covered. Researchers and funding bodies would be encouraged to allocate dedicated remuneration budgets.
Payment methods may be varied to accommodate consumers' preferences.
"Offering remuneration enables consumers from different socioeconomic and under-represented population groups to be engaged in research and thus encourages the inclusion of diverse perspectives," Zhou said.
The framework also stresses the importance of non-financial forms of recognition, such as co-authorship, acknowledgements and offers of professional development opportunities for consumers involved in research.
As part of the framework development, a national survey of Research Australia member organisations was undertaken. It found high levels of recognition of consumer contributions (92 per cent) but inconsistent financial remuneration practices and varied approaches to recognising consumer contributions.
"By centring the voices of consumers and research organisations, the framework provides a strong foundation for consistent and ethical remuneration practices across Australia," Associate Professor Desborough said.
"The recommendations can be used to create a research culture that is fairer, stronger, and more responsive to the needs of all Australians."
Dr Talia Avrahamzon, Head of Policy, Projects and Advocacy at Research Australia, said the development of the framework reflected the importance of consumer participation in health research.
"Research Australia is proud to have been a part of this important work, and we would like to thank the members of Research Australia's Consumer Remuneration Working Group for their contributions to this framework," Dr Avrahamzon said.
"Consumers are central to high-performing health and medical research and innovative systems. Research Australia has consistently championed formal recognition of lived experience, and this work reinforces that valuing their contributions is not optional - it is essential to delivering research that is relevant, impactful and truly centred on patient outcomes."
Recognising Consumers' Contributions to Health Research is published on the Research Australia website.
