Background: 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.
Methods: 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.
Results: 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.
Conclusions: Findings suggest that collaborating with end-users in the process of aging research confers personal and scientific benefits for both older adults and researchers.
Keywords: Brain health; Citizen advisory group; Co-creation; Collaborative research; Evaluation; Multimethod; Older adults; Program development.
When creating a new health program, it is beneficial for researchers to team up with the people who will actually use the program. This collaboration helps make the program better in terms of its quality, how easy it is to use, and how much of an impact it will have. A citizen advisory group of nine older adults helped researchers develop an online program about dementia awareness and risk reduction. This study aimed to understand how these group members felt about their role, whether the group achieved its goals, and how it related to different collaborative research methods. Both the group members and researchers took part in an online survey, and the group members also participated in a focus group interview. The group members enjoyed their involvement and felt that it met their personal goals. They, along with the researchers, believed the group successfully achieved its objectives and added value to the program. They also agreed that the group followed the principles of collaborative research approaches. During the focus group, group members emphasized the personal benefits of participating in the project, their preference for limited direct contact with researchers, and how their involvement made the program more accessible to the public. Overall, when researchers and citizen advisory groups collaborate on health programs, it benefits everyone involved, leading to better program quality and health benefits.
© 2024. The Author(s).