Symons Tanya, Bowden Janelle, McKenzie Anne, Fallon-Ferguson Julia M, Weekes Leanne Y, Ansell James, Murphy Rinki, Jesudason Shilpa, Saxena Manoj, Nichol Alistair, Straiton Nicola
University of Sydney, NSW, Australia.
AccessCR Pty Ltd, Sydney, NSW, Australia.
Public Health Res Pract. 2023 Mar 15;33(1):32122209. doi: 10.17061/phrp32122209.
This manuscript describes the novel approach to developing a toolkit to support meaningful consumer involvement in clinical trials in Australia to help guide others in considering the development of similar resources.The toolkit aims to support greater consumer involvement in shaping how clinical research is prioritised, designed and conducted. Type of program or service: A working group of researchers, research organisations and consumers was established to co-develop the Consumer Involvement and Engagement Toolkit (the 'Toolkit'), a digital resource to guide researchers and organisations regarding consumer involvement in clinical trials.
A literature review and international scan of best practice revealed numerous resources outlining best practice for consumer involvement in clinical research and clear evidence of its impact and value. Through a novel content-sharing process, we were able to utilise these resources to develop a comprehensive Toolkit for researchers and research organisations that provides world-class guidance.
There is a growing movement to ensure consumer involvement in healthcare, including in clinical research. We discovered its proponents were willing to share their tools and resources to promote international consumer involvement. Although these international tools and resources needed adaptation to suit the Australian research environment, this was achievable with far less effort than developing them from scratch.
本手稿描述了开发一套工具包的新方法，以支持澳大利亚消费者有意义地参与临床试验，帮助指导其他人考虑开发类似资源。该工具包旨在支持消费者更多地参与确定临床研究的优先次序、设计和实施方式。项目或服务类型：成立了一个由研究人员、研究机构和消费者组成的工作组，共同开发“消费者参与和介入工具包”（简称“工具包”），这是一种数字资源，用于指导研究人员和机构让消费者参与临床试验。
文献综述和对最佳实践的国际审视发现，有大量资源概述了消费者参与临床研究的最佳实践，以及其影响和价值的明确证据。通过一个新颖的内容共享过程，我们能够利用这些资源为研究人员和研究机构开发一个全面的工具包，提供世界级的指导。
确保消费者参与医疗保健，包括临床研究的运动正在兴起。我们发现其支持者愿意分享他们的工具和资源，以促进国际消费者的参与。尽管这些国际工具和资源需要进行调整以适应澳大利亚的研究环境，但这比从头开发要省力得多。
