The latest edition of the Consumers Health Forum journal, Health Voices, http://healthvoices.org.au/volume/issues/april-2018/ focuses on the consumer role in health and medical research and includes an article from the HSRAANZ President, Jonathon Karnon,, Professor of Health Economics at the University of Adelaide - "How should Australia make the most of consumer participation in health services research?". In his article Jon concludes:
Challenges to high-value engagement between researchers and consumers include the willingness and capacity of researchers and consumers to engage, the extent to which engaged consumers represent consumers who do not engage and the methods used to engage consumers. Greater involvement of consumers and community in decisions to fund new research and new health care and health policies is an important next step to address these challenges. Incentives matter. If consumers have real influence on decisions, researchers will have strong incentives to engage meaningfully with consumers. The need to demonstrate the value of consumer participation will lead to improvements in the process of engagement and avoid tokenistic engagement that wastes the time of researchers and consumers.
The importance of consumer participation has been recognised by research funding bodies and Australian governments and bold steps have been taken to promote researcher engagement with consumers. Yet bolder steps may be necessary to support meaningful consumer participation that delivers real value.
HSRAANZ member Helen Dickinson, Associate Professor of Public Service Research at the School of Business, University of New South Wales, Canberra has also contributed an article "Research nothing about us without us" on the idea that those who are affected by research have a right to influence what is researched and how this is done.