Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform

Yun-Hee Jeon, Mirim Shin, Adam Smith, Elizabeth Beattie, Henry Brodaty, Dennis Frost, Anthony Hobbs, Piers Kotting, Glenys Petrie, Martin Rossor, Jane Thompson, James Vickers and Donna Waters
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Yun-Hee Jeon: Susan Wakil School of Nursing and Midwifery, The University of Sydney, Sydney 2006, Australia
Mirim Shin: Susan Wakil School of Nursing and Midwifery, The University of Sydney, Sydney 2006, Australia
Adam Smith: Office of the National Director for Dementia Research, National Institute for Health Research (NIHR), University College London, London WC1N 3BG, UK
Elizabeth Beattie: School of Nursing, Queensland University of Technology, Brisbane 4059, Australia
Henry Brodaty: Centre for Healthy Brain Ageing (CHeBA), University of New South Wales, Sydney 2052, Australia
Dennis Frost: StepUp for Dementia Research, The University of Sydney, Sydney 2006, Australia
Anthony Hobbs: Little Company of Mary Health Care Ltd., Canberra 2617, Australia
Piers Kotting: College of Medicine and Health, University of Exeter, Exeter EX1 2LU, UK
Glenys Petrie: StepUp for Dementia Research, The University of Sydney, Sydney 2006, Australia
Martin Rossor: Office of the National Director for Dementia Research, National Institute for Health Research (NIHR), University College London, London WC1N 3BG, UK
Jane Thompson: StepUp for Dementia Research, The University of Sydney, Sydney 2006, Australia
James Vickers: Wicking Dementia Research & Education Centre, University of Tasmania, Hobart 7001, Australia
Donna Waters: Susan Wakil School of Nursing and Midwifery, The University of Sydney, Sydney 2006, Australia

IJERPH, 2021, vol. 18, issue 21, 1-16

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/ethnicity) 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.

Keywords: dementia; research participation; recruitment; registry; digital platform; consumer involvement; consumer engagement (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
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