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Early implementation and evaluation of stepup for dementia research: an Australia-wide dementia research participation and public engagement platform

Citation

Jeon, YH and Shin, M and Smith, A and Beattie, E and Brodaty, H and Frost, D and Hobbs, A and Kotting, P and Petrie, G and Rossor, M and Thompson, J and Vickers, JC and Waters, D, Early implementation and evaluation of stepup for dementia research: an Australia-wide dementia research participation and public engagement platform, International Journal of Environmental Research and Public Health, 18, (21) pp. 11353. ISSN 1661-7827 (2021) [Refereed Article]

DOI: doi:10.3390/ijerph182111353

Abstract

Recruiting participants for dementia research takes time. For those who are interested, opportunities to participate can be ad hoc. Delays in finding the right participants can result in studies taking longer to deliver, often requiring funding extensions, and ultimately increasing the cost and limiting the effectiveness of research and evaluation. To address these issues, a digital platform, StepUp for Dementia Research, was developed in 2019 and evaluated through ongoing data analytics, researcher feedback and annual volunteer surveys in 2019 and 2021. Using innovative matching technology, StepUp provides volunteers with an opt-in, secure way of registering interest in dementia studies and allows researchers to access matched volunteers in Australia. As of June 2021, 1070 volunteers registered (78% female), and 25 organizations became champions for StepUp promotion. Of 122 registered researchers, 90 completed training. Forty studies from 17 research/health institutions recruited participants using StepUp. The evaluation demonstrated program feasibility and recruitment efficiency with a high level of satisfaction from users. Evaluation outcomes highlighted disparities in public participation in dementia research (e.g., gender, education and race/eth-nicity) and provided valuable insights for further enhancements of StepUp. A concerted and strategic effort is needed by leading registries such as StepUp to ensure narrowing volunteer participation gaps in dementia research.

Item Details

Item Type:Refereed Article
Keywords:dementia, research participation, recruitment, registry, digital platform, consumer involvement, consumer engagement
Research Division:Biomedical and Clinical Sciences
Research Group:Neurosciences
Research Field:Central nervous system
Objective Division:Health
Objective Group:Clinical health
Objective Field:Clinical health not elsewhere classified
UTAS Author:Vickers, JC (Professor James Vickers)
ID Code:152670
Year Published:2021
Web of Science® Times Cited:1
Deposited By:Wicking Dementia Research and Education Centre
Deposited On:2022-08-23
Last Modified:2022-09-14
Downloads:0

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