Involving elderly research participants in the co-design of a future multi-generational cohort study.
Involving elderly research participants in the co-design of a future multi-generational cohort study.
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DOI：
10.1186/s40900-021-00271-4
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发表时间：
2021-05-03
影响因子：
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通讯作者：
Lacaze P
中科院分区：
文献类型：
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作者：
Nunn JS;Sulovski M;Tiller J;Holloway B;Ayton D;Lacaze P
有人建议，现有的阿司匹林在减少老年扩展观察队列研究(ASPREE-XT)中的作用将为未来的多代研究(MGRS)提供平台。广告被发送给14,268名参与者(年龄在74岁及以上，来自澳大利亚，分布在大都市和农村)，邀请他们分享对参与未来MGRS共同设计的看法和偏好，因为他们的偏好尚不清楚。这篇文章的目的是以个案研究的形式报告让研究参与者参与的过程，以及这如何影响到拟议的多代研究研究的共同设计，使用一种新的标准化报告工具。我们使用参与性行动研究，通过时事通讯、电话采访和面对面研讨会，让老年研究参与者参与2017至2019年拟议的多代队列研究的共同设计。我们使用新书《Alpha计划标准化数据0.1版》(STARDIT 0.1)来计划和报告参与者的参与活动如何对研究设计产生积极影响。59名ASPREE-XT参与者接受了电话采访，18名参与者参加了面对面的活动。参与者的参与通过改进研究目标、制定方案、影响资金决定和改进伦理应用，对拟议的研究设计产生了积极影响。学习要点包括：保持ASPREE-XT的理想(尊重、质量和透明度)的重要性；研究参与者更倾向于选择接收结果(包括遗传结果)；参与者需要参与关于征聘、数据获取、治理和其他道德问题的决策；以及更倾向于不同的沟通方法，包括面对面和在线方法。这一过程的数据表明，它受到所有利益攸关方的高度重视，包括研究参与者、研究工作人员和首席调查人员。ASPREE-XT的一位首席研究调查员将参与者的参与描述为“极大的帮助”。这一案例研究表明，将参与者纳入研究性研究的设计对研究设计、参与者和研究人员都产生了积极的影响。使用标准化的报告工具来描述方法和影响，提供了一种从这个案例研究中学习的方法，为计划涉及人的未来研究提供信息。网上版载有补充材料，可在10.1186/s40900-021-00271-4查阅。
It has been proposed that the existing ASPirin in Reducing Events in the Elderly Extension observational cohort study (ASPREE-XT) would provide a platform for a future multigenerational research study (MGRS). An advert was sent to 14,268 participants (aged 74 years and older, from Australia, and located in both metropolitan and rural locations) to invite them to share views and preferences about being involved in the co-design of a future MGRS, as their preferences were not known. The objective of this article is to report as a case study the process of involving study participants and how this impacted the co-design of a proposed multi-generational research study, using a novel standardised reporting tool. We used participatory action research to involve elderly research participants in the co-design of a proposed multi-generational cohort study between 2017 and 2019 using newsletters, telephone interviews and an in-person workshop. We used the novel ‘Standardised Data on Initiatives Alpha Version 0.1’ (STARDIT 0.1) to plan and report how participant involvement activities positively impacted the study design. Fifty-nine ASPREE-XT participants were interviewed by telephone and 18 participants attended a face-to-face event. Involving participants positively impacted the proposed study design by improving the research objectives, developing protocols, influencing funding decisions and improving ethics applications. Learning points included the importance of maintaining the ideals of ASPREE-XT (respect, quality and transparency); research participants’ preference for the option of receiving results (including genetic results); participants’ need for involvement in decisions about recruitment, data access, governance and other ethical issues; and the preference for different communication methods, including both face-to-face and online methods. Data from the process indicated it was highly valued by all stakeholders, including research participants, study staff and lead investigators. Involvement of participants was described by a lead study investigator of ASPREE-XT as “enormously helpful”. This case study demonstrates that including participants in the design of a research study positively impacted the study design, participants and researchers. Using a standardised reporting tool to describe the methods and impacts provides a way for learning from this case study to inform future research studies planning to involve people. The online version contains supplementary material available at 10.1186/s40900-021-00271-4.