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

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.