A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations

Abstract

Plain English summary Consumer involvement in clinical research (including clinical trials) is considered best practice in Australia, yet it is not yet standard practice. Before doing this research, we did not know the involvement, perceptions and experiences of researchers and consumers within research networks or organisations. Surveys were used to ask Australian Clinical Trials Alliance (ACTA) member organisations including their consumers, about how consumers are being involved in clinical trials. The surveys found that consumers are involved across many clinical trials conducted in Australia, and that their input is valued by researchers and research organisations. Sometimes researchers were uncertain on how to best involve consumers in the different aspects of clinical trials so their contribution was effective and added value. Consumers also expressed at times they were uncertain as to what was expected of them, and in some instances training would have been useful to help them engage more effectively. Support and training also needs to be more appropriate for people from different populations, ethnic backgrounds and cultures, including First Nations peoples. All agreed more resources, training and funding would be needed to support consumer involvement in clinical trials.

Keywords

• Clinical trials
• Consumer
• Community
• Involvement
• Research
• Australia