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

Research Involvement and Engagement

Janelle Bowden¹  Nicola Straiton²  Shilpanjali Jesudason³  Karena Conroy⁴  Anne McKenzie⁵  James Ansell⁶  Julia Fallon-Ferguson⁷  John R. Zalcberg⁸  Ania Anderst⁹ 

[1] AccessCR Pty Ltd;Australian Clinical Trials Alliance;Central Northern Adelaide Renal and Transplantation Service;Consumer & Community Involvement Program, The George Institute for Global Health;Consumer Engagement, Telethon Kids Institute, Perth Children’s Hospital;Consumers Health Forum of Australia;School of Population Health, Curtin University;School of Public Health and Preventive Medicine, Monash University;The George Institute for Global Health;

关键词: Clinical trials;    Consumer;    Community;    Involvement;    Research;    Australia;   

DOI  :  10.1186/s40900-022-00338-w

来源: DOAJ

【 摘 要 】

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.

【 授权许可】

Unknown