Realizing the Representative Reach: How Digital is Enabling Engagement of Hispanic Participants from a Semi Rural County in the United States

Abstract

AbstractBackgroundEarly detection of brain‐related disorders is key to prevention of Alzheimer’s disease (AD), and research on Hispanic populations is severely lacking. Obstacles to recruitment include the lack of trust in research and researchers and requirements for English proficiency, which excludes many potential Hispanic participants.MethodsResearchers from El Faro Health and Therapeutics in Starr County, Texas and the Framingham Heart Study are teaming up on a digital phenotyping study and incorporating “trust” as a central theme for recruitment/retention of Hispanic participants. Study materials are in both English and Spanish. The smartphone tasks are presented in two formats: “in‐clinic” using an iPad and “remote” utilizing participants’ smartphones. Activities include voice tasks, gait and balance, and game‐like cognitive tasks. Longitudinal data will be collected every three months for one year.ParticipantsRecruitment is for anyone aged 18+ in Starr County, which is approximately 98% Hispanic. To maximize inclusivity, there are no other inclusion/exclusion criteria. Study procedures are customized to accommodate individuals. Recruitment goal is 500 participants within one year, with planned expansion to 5,000+ over 5 years.ResultsRecruitment approach includes several components: (1) El Faro investigators have been providing clinical services to community members for decades, and are respected and trusted members of the community. (2) All participant‐facing study materials are available in both English and Spanish, with most translated into the specific local dialect. (3) Community fliers include text in both English and Spanish. (4) Social media outreach has sparked a great deal of interest for participating in research, and the team attends community events to further spread the word. (5) Multi‐generational families are encouraged given family decision‐making culture; (6) Word‐of‐mouth within the Starr County community is expected to be an important contributor to recruitment.ConclusionsAlthough data collection will begin in February 2023, already more than 150 participants have expressed interest in being involved. Leveraging resources to enable highly respected and trusted local researchers to conduct the research, and using participant‐centric design approaches will result in greater success in recruitment and retention of this underrepresented population.