Development of a Mobile-First Registry to Recruit Healthy Volunteers and Members of Underrepresented Communities for Alzheimer's Disease Prevention Studies.
Alzheimer’s disease prevention
participant recruitment registry
underrepresented communities
user research
Journal
The journal of prevention of Alzheimer's disease
ISSN: 2426-0266
Titre abrégé: J Prev Alzheimers Dis
Pays: Switzerland
ID NLM: 101638820
Informations de publication
Date de publication:
2023
2023
Historique:
medline:
25
10
2023
pubmed:
24
10
2023
entrez:
24
10
2023
Statut:
ppublish
Résumé
Web-based participant recruitment registries can be useful tools for accelerating enrollment into studies, but existing Alzheimer's disease (AD)-focused recruitment registries have had limited success enrolling individuals from underrepresented racial and ethnic groups. Designing these registries to meet the needs of individuals from these communities, including designing mobile-first, may facilitate improvement in the enrollment of underrepresented groups. Evaluate the usability of a prototype mobile-first participant recruitment registry for AD prevention studies; assess users' perceptions of and willingness to sign up for the registry. Quantitative usability testing and an online survey; online setting. We recruited 1,358 adults ages 45-75 who self-reported not having a diagnosis of mild cognitive impairment, AD, or other forms of dementia (Study 1: n=589, Study 2: n=769). Black/African American and Hispanic/Latino participants were specifically recruited, including those with lower health literacy. Study 1 measures the prototype's usability through observed task success rates, task completion times, and responses to the System Usability Scale. Study 2 uses an online survey to collect data on perceptions of and willingness to sign up for the mobile-first registry. Study 1 findings show the prototype mobile-first recruitment registry website demonstrates high usability and is equally usable for Black / African American, Hispanic/Latino, and White user groups. Survey results from Study 2 indicate that users from underrepresented communities understand the registry's purpose and content and express willingness to sign up for the registry on a mobile device. Designing mobile-first participant recruitment registries based on feedback from underrepresented communities may result in more sign-ups by individuals from minoritized communities.
Sections du résumé
BACKGROUND
Web-based participant recruitment registries can be useful tools for accelerating enrollment into studies, but existing Alzheimer's disease (AD)-focused recruitment registries have had limited success enrolling individuals from underrepresented racial and ethnic groups. Designing these registries to meet the needs of individuals from these communities, including designing mobile-first, may facilitate improvement in the enrollment of underrepresented groups.
OBJECTIVES
Evaluate the usability of a prototype mobile-first participant recruitment registry for AD prevention studies; assess users' perceptions of and willingness to sign up for the registry.
DESIGN AND SETTING
Quantitative usability testing and an online survey; online setting.
PARTICIPANTS
We recruited 1,358 adults ages 45-75 who self-reported not having a diagnosis of mild cognitive impairment, AD, or other forms of dementia (Study 1: n=589, Study 2: n=769). Black/African American and Hispanic/Latino participants were specifically recruited, including those with lower health literacy.
METHODS AND MEASUREMENTS
Study 1 measures the prototype's usability through observed task success rates, task completion times, and responses to the System Usability Scale. Study 2 uses an online survey to collect data on perceptions of and willingness to sign up for the mobile-first registry.
RESULTS
Study 1 findings show the prototype mobile-first recruitment registry website demonstrates high usability and is equally usable for Black / African American, Hispanic/Latino, and White user groups. Survey results from Study 2 indicate that users from underrepresented communities understand the registry's purpose and content and express willingness to sign up for the registry on a mobile device.
CONCLUSIONS
Designing mobile-first participant recruitment registries based on feedback from underrepresented communities may result in more sign-ups by individuals from minoritized communities.
Identifiants
pubmed: 37874108
doi: 10.14283/jpad.2023.86
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
857-864Subventions
Organisme : NIA NIH HHS
ID : P30 AG072980
Pays : United States
Organisme : NIA NIH HHS
ID : R43 AG055218
Pays : United States
Déclaration de conflit d'intérêts
Raj Aggarwal is a full-time employee of Provoc. Provoc receives funding contract for a range of studies and projects, but none related to mobile-responsive registries. Emily Sidnam-Mauch is a full-time employee of Clemson University. She has received consulting fees from Provoc. Deborah Neffa-Creech and Aaron Plant are full-time employees of Sentient Research. Sentient Research receives funding contract for a range of studies and projects, but none related to mobile-responsive registries. Emily Williams and Elodie Shami were full-time employees of Marketade at the time the work was completed and report no conflicts. Usha Menon is a full-time employee of University of South Florida Health College of Nursing and reports no conflicts. Sheba George is a full-time employee of University of California Los Angeles and reports no conflicts. Jessica Langbaum is a full-time employee of Banner Health. She has received consulting fees from Alector, Biogen, Denovo Biopharma, and Provoc for projects unrelated to mobile-responsive registries.