Hispanic/Latino perspectives about participation in online recruitment registries for research

Abstract

AbstractBackgroundOnline recruitment registries have emerged as a novel approach for accelerating enrollment of participants in Alzheimer’s disease (AD) research. While investigators may benefit from having access to a large research‐ready and often prescreened population, older Hispanic/Latino adults enroll less frequently in online recruitment registries, particularly for AD. Using qualitative data from focus groups, we elicited perspectives from community dwelling older Hispanics/Latinos about barriers and facilitators to participation in online registries that recruit to AD research studies.MethodWe conducted 4 focus groups via Zoom in May 2022 and enrolled a total of 15 older Hispanic/Latino adults aged 50+ years who participated in the University of California, Irvine Consent‐to‐Contact (C2C) registry. The C2C is a local online recruitment registry that enrolls individuals from Orange County (OC), California and collects minimal data for the purpose of better matching participants to recruiting studies. We used a semi‐structured interview guide to assess Hispanic participants’ perceptions and experiences about AD research, motivators and barriers to enrolling into an online recruitment registry and suggestions for framing messages to improve enrollment.ResultHispanic/Latino participants were predominately female (60%), US born (80%), college educated (80%) and had a mean age of 60. Reflexive thematic analysis identified 3 emergent themes: (1) being personally affected by AD as a driving factor in participants’ desire to participate; (2) a lack of digital literacy and access to digital devices as a barrier to enrollment; and (3) framing messages that are culturally tailored and aimed at reducing fear towards research.ConclusionUnderstanding the factors that drive decisions to enroll in online registries among Hispanics/Latinos will be crucial for the development of interventions to improve participation. Our preliminary results highlight key concerns among older Hispanics/ Latinos already in registries. Additional focus groups will include other key stakeolders from Hispanic/Latino communities in OC to compare findings.