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

Recruiting participants for dementia research takes time. For those who are interested, opportunities to participate can be <i>ad hoc</i>. Delays in finding the right participants can result in studies taking longer to deliver, often requiring funding extensions, and ultimately increasin...

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Autores principales:	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, Donna Waters
Formato:	article
Lenguaje:	EN
Publicado:	MDPI AG 2021
Materias:	dementia research participation recruitment registry digital platform consumer involvement Medicine R
Acceso en línea:	https://doaj.org/article/5c52c29bd8634d649439d95cec485260
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id	oai:doaj.org-article:5c52c29bd8634d649439d95cec485260
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spelling	oai:doaj.org-article:5c52c29bd8634d649439d95cec4852602021-11-11T16:29:07ZEarly Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform10.3390/ijerph1821113531660-46011661-7827https://doaj.org/article/5c52c29bd8634d649439d95cec4852602021-10-01T00:00:00Zhttps://www.mdpi.com/1660-4601/18/21/11353https://doaj.org/toc/1661-7827https://doaj.org/toc/1660-4601Recruiting participants for dementia research takes time. For those who are interested, opportunities to participate can be <i>ad hoc</i>. 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.Yun-Hee JeonMirim ShinAdam SmithElizabeth BeattieHenry BrodatyDennis FrostAnthony HobbsPiers KottingGlenys PetrieMartin RossorJane ThompsonJames VickersDonna WatersMDPI AGarticledementiaresearch participationrecruitmentregistrydigital platformconsumer involvementMedicineRENInternational Journal of Environmental Research and Public Health, Vol 18, Iss 11353, p 11353 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	dementia research participation recruitment registry digital platform consumer involvement Medicine R
spellingShingle	dementia research participation recruitment registry digital platform consumer involvement Medicine R 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 Donna Waters Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform
description	Recruiting participants for dementia research takes time. For those who are interested, opportunities to participate can be <i>ad hoc</i>. 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.
format	article
author	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 Donna Waters
author_facet	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 Donna Waters
author_sort	Yun-Hee Jeon
title	Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform
title_short	Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform
title_full	Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform
title_fullStr	Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform
title_full_unstemmed	Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform
title_sort	early implementation and evaluation of stepup for dementia research: an australia-wide dementia research participation and public engagement platform
publisher	MDPI AG
publishDate	2021
url	https://doaj.org/article/5c52c29bd8634d649439d95cec485260
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Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform

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