Consumers’ contribution to health research

Abstract

Background: Despite growing recognition of the importance of consumer engagement in advancing consumer-oriented and relevant research, many researchers experience challenges in appropriately acknowledging consumers' contributions to the research process. A pivotal aspect of this challenge relates to the financial remuneration offered to consumers in recognition of their contributions to research in terms of time, skills and expertise. This may be due to a lack and inconsistency of reported practice and guidance regarding remuneration. We sought to explore current practices for recognising consumers' contribution to health research and to understand health organisations' experiences and perspectives regarding this.

Methods: A working group convened by Research Australia comprised of two academics, one PhD candidate and eight health research organisation representatives, including consumer-led organisations, was established to develop a survey to elucidate current consumer remuneration practices in Australia. Drawing on existing consumer engagement literature, the draft survey questions were constructed and finalised following review, discussion and reaching consensus among the working group. The survey was distributed online to 503 research organisation participants across Australia from December 2023 to February 2024. Quantitative data were analysed using descriptive statistics, and qualitative data were analysed using content analysis methods.

Results/findings: 124 completed surveys were returned (25% response rate). 92% of participants supported recognition of consumer contributions to health research. Of this, 56% provided financial remuneration, while 36% provided non-financial forms of recognition, such as training and acknowledgement of academic outputs. However, recognition methods used in practice differed, and rates of financial remuneration varied across different levels of engagement. The need for national guidelines in consumer remuneration practice was expressed by 93% of participants.

Implications/key message: These survey findings support an imperative to establish national recommendations for consumer remuneration, tailored to the needs of different organisations and contexts in Australia.

Patient and public contribution: A working group formed with eight member organisations from Research Australia, including consumer-led organisations, contributed to the survey development and interpretation of the qualitative findings by reflecting on the themes developed.