Department of Health Services Research and Implementation Science, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia.
Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia.
Patient. 2024 Jul;17(4):471-479. doi: 10.1007/s40271-023-00667-2. Epub 2024 Feb 24.
Consumer engagement improves research quality and relevance but can be difficult to implement. This study aimed to explore the motivations and understand the barriers, if any, experienced by consumers before and when partnering with cancer research teams.
Semi-structured interviews were conducted with consumers and the results analysed thematically. Two groups were recruited: consumers who were members of the consumer registry and patients who did not have previous experience of being a consumer in a researcher partnership.
Twenty-one interviews were conducted with a total of 22 participants aged between 26 and 74 years. Consumers motivation was driven by altruism to help others and personal benefits. Barriers to beginning and maintaining consumer engagement included consumers' perceptions of being appreciated by researchers and meaningful communication between researchers and consumers.
Australian policy has made important steps towards consumer engagement in research. This study showed that demonstrating an appreciation for consumers and effective communication are key areas to consider when designing implementation strategies of these policies in the cancer research space in the future.
消费者的参与可以提高研究质量和相关性，但实施起来可能具有挑战性。本研究旨在探索消费者在与癌症研究团队合作之前和合作时的动机，并了解可能存在的障碍。
对消费者进行了半结构化访谈，对结果进行了主题分析。招募了两组参与者：消费者注册中心的成员和以前没有参与过研究伙伴关系的患者。
共进行了 21 次访谈，共有 22 名年龄在 26 至 74 岁之间的参与者。消费者的动机是出于帮助他人和个人利益的利他主义。开始和维持消费者参与的障碍包括消费者对研究人员的赞赏和研究人员与消费者之间的有效沟通的看法。
澳大利亚的政策在消费者参与研究方面已经迈出了重要的一步。本研究表明，在未来癌症研究领域设计这些政策的实施策略时，需要考虑对消费者的赞赏和有效沟通是关键领域。
