D'Amico Danielle, Savundranayagam Marie Y, Biles Rose, Itzhak Inbal, Anderson Nicole D
Rotman Research Institute, Baycrest Academy for Research and Education, 3560 Bathurst Street, Toronto, ON, M6A 2E1, Canada.
School of Health Studies, Western University, London, ON, Canada.
Res Involv Engagem. 2024 Dec 27;10(1):135. doi: 10.1186/s40900-024-00643-6.
Collaborative research with end-users is an effective way to generate meaningful research applications and support greater impact on practice and knowledge exchange. To address these needs, a Citizen Advisory Group (CAG) of nine older adults (ages 64-80, 67% women) was formed to advise scientists on the development of Brain Health PRO (BHPro), a web-based platform designed to increase dementia prevention literacy and awareness. The current study evaluated if the CAG met its objectives, how inclusion of the CAG aligned with collaborative research approaches, and the CAG's experience and satisfaction throughout the development process.
An anonymous online survey was administered to the CAG members and 30 scientist/trainee authors of the BHPro chapters. The CAG also participated in an online focus group.
Most CAG members and chapter authors agreed that the CAG met its primary objectives and added unique value to BHPro. Both groups viewed the CAG's involvement as well-aligned with engaged scholarship, co-production, integrated knowledge translation, and, to a lesser extent, participatory research practices. CAG members reported high satisfaction with personal goal attainment, which included learning, collaborating with others, and making a meaningful impact. Content analyses of the focus group revealed three categories: 1) personal benefits related to learning, connection, and feeling valued, 2) value of a masked peer-review process, and 3) an accessible final product.
Findings suggest that collaborating with end-users in the process of aging research confers personal and scientific benefits for both older adults and researchers.
与终端用户开展合作研究是产生有意义的研究应用并支持对实践和知识交流产生更大影响的有效途径。为满足这些需求,成立了一个由九名老年人(年龄在64 - 80岁之间,67%为女性)组成的公民咨询小组(CAG),就Brain Health PRO(BHPro)的开发向科学家提供建议。BHPro是一个基于网络的平台,旨在提高痴呆症预防知识和意识。本研究评估了公民咨询小组是否实现了其目标,其纳入如何与合作研究方法相一致,以及该小组在整个开发过程中的经验和满意度。
对公民咨询小组成员以及BHPro各章节的30位科学家/实习作者进行了匿名在线调查。公民咨询小组还参加了一次在线焦点小组讨论。
大多数公民咨询小组成员和章节作者都认为该小组实现了其主要目标,并为BHPro增添了独特价值。两组都认为公民咨询小组的参与与参与式学术、共同生产、综合知识转化以及在较小程度上与参与式研究实践高度契合。公民咨询小组成员对个人目标的达成表示高度满意,这些目标包括学习、与他人合作以及产生有意义的影响。焦点小组的内容分析揭示了三个类别:1)与学习、联系和感到被重视相关的个人益处,2)匿名同行评审过程的价值,3)一个易于获取的最终产品。
研究结果表明,在衰老研究过程中与终端用户合作对老年人和研究人员都带来了个人和科学方面的益处。