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. 2024 Dec 27;10(1):135.
doi: 10.1186/s40900-024-00643-6.

Engaging older adults in the process of aging research: a multimethod study evaluating the experience and efficacy of a citizen advisory group for a dementia risk reduction program

Danielle D'Amico  1 , Marie Y Savundranayagam  2 , Rose Biles  2 , Inbal Itzhak  3 , Nicole D Anderson  4   5 ; Canadian Consortium on Neurodegeneration in Aging (CCNA) CAN-THUMBS UP Study Group
Collaborators, Affiliations

Engaging older adults in the process of aging research: a multimethod study evaluating the experience and efficacy of a citizen advisory group for a dementia risk reduction program

Danielle D'Amico et al. Res Involv Engagem. .

Abstract

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.

Plain language summary

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.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: This study was approved by the Baycrest Research Ethics Board (REB 22-02). All participants providing online informed consent to participate. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
The proportion of CAG members (top) and chapters authors (bottom) who agreed that the CAG met their intended objectives. (BHPro: Brain Health PRO; CAG: Citizen Advisory Group)
Fig. 2
Fig. 2
The percentage of CAG members who were satisfied with the CAG team meetings (top) and expert team meetings (bottom). (BHPro: Brain Health PRO; CAG: Citizen Advisory Group)
Fig. 3
Fig. 3
Proportion of CAG members who agreed with different aspects of their involvement in the development of Brain Health PRO (CAG: Citizen Advisory Group)
Fig. 4
Fig. 4
The proportion of CAG members who were satisfied with different aspects of the organization and structure of the CAG. (CAG: Citizen Advisory Group)
Fig. 5
Fig. 5
Average ratings for each collaborative research approach among CAG members and BHPro chapter authors. (BHPro: Brain Health PRO; CAG: Citizen Advisory Group
See this image and copyright information in PMC

References

    1. Jull J, Giles A, Graham ID. Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge. Implement Sci IS. 2017;12:150. - PMC - PubMed
    1. Morris ZS, Wooding S, Grant J. The answer is 17 years, what is the question: understanding time lags in translational research. J R Soc Med. 2011;104(12):510–20. - PMC - PubMed
    1. DAmico D, Yusupov I, Zhu L, Lass JW, Plunkett C, Levine B, et al. Feasibility, acceptability, and impact of a self-guided e-learning memory and brain health promotion program for healthy older adults. Clin Gerontol. 2024;47(1):4–16. - PubMed
    1. Hanlon CA, McIlroy D, Poole H, Chopra J, Saini P. Evaluating the role and effectiveness of co-produced community-based mental health interventions that aim to reduce suicide among adults: a systematic review. Health Expect. 2023;26(1):64–86. - PMC - PubMed
    1. McKay H, Nettlefold L, Bauman A, Hoy C, Gray SM, Lau E, et al. Implementation of a co-designed physical activity program for older adults: positive impact when delivered at scale. BMC Public Health. 2018;18(1):1289. - PMC - PubMed

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