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.

Recruitment approaches and profiles of consenting family caregivers and people living with dementia: A recruitment study within a trial

“…Our recruitment strategies highlighted that targeting referring professionals and organisations, as well as accessing databases of PLwD interested in research participation, such as Join Dementia Research [ 22 ] and StepUp for Dementia Research [ 18 ], were the most effective for generating expressions of interest and converting these into a consent to participate. However, there is likely an inherent bias in the database samples as these include people who have already expressed an interest in participating in research.…”

“…In some countries, online research networks (eg. StepUp for Dementia Research [ 18 ]), enable widespread recruitment and this potential greatly increased recruitment during COVID-19 owing to the remote nature of the system [ 18 ].…”

Advance planning for research participation: Time to translate this innovation into practice

“…Targeted invitations were sent to individuals and/or organisations to elicit relevant expertise, and consumer representatives were identified through Dementia Australia and StepUp for Dementia Research. 10 All participants voluntarily agreed to participate. Table 2 lists participants and their affiliation.…”

“…An online workshop was designed as a forum for stakeholders to exchange views and suggestions on processes to support advance planning for research. Targeted invitations were sent to individuals and/or organisations to elicit relevant expertise, and consumer representatives were identified through Dementia Australia and StepUp for Dementia Research 10 . All participants voluntarily agreed to participate.…”

A national open‐access research registry to improve recruitment to clinical studies

“…JDR has attracted large numbers of volunteers without a dementia diagnosis in an age range that makes them valuable for screening for high risk and pre-clinical studies. There are several ongoing initiatives globally to create cohorts in a similar population to support prevention and early intervention research 16,17,20,21,27. These studies typically seek deeper phenotypic and genotypic characterization of par-…”