An Elicitation Study to Understand Black, Hispanic, and Male Older Adults’ Willingness to Participate in Alzheimer’s Disease-Focused Research Registries

Abstract

Background: There is a lack of racial, ethnic, and sex diversity in recruitment research registries and Alzheimer’s disease (AD) research studies and trials. Theory-based recruitment messages may provide an opportunity to increase study participant diversity in AD research studies and trials. Objective: To identify behavioral, normative, and control beliefs that are associated with joining an AD-focused recruitment registry among historically underrepresented groups. Method: Using a Reasoned Action Approach, we conducted 60 semi-structured phone interviews in 2020 among White, Black, and Hispanic adults ages 49–79 years in Philadelphia, PA. Underlying beliefs were elicited for the target behavior of “signing up to be on a registry for brain health research studies in the next month.” Percentages based on counts are reported for the overall sample and by race and ethnicity and sex. Results: Participants were most concerned that if they were to sign up for a registry, they would be asked to participate in experimental studies. Advancing science to help others was a commonly reported positive belief about signing up. Participants’ children and friends/neighbors were important from a normative perspective. Barriers to enrollment focused on logistical concerns and inconvenient sign-up processes, including using a computer. Results show generally few racial and ethnic or sex group differences. Conclusion: The elicited beliefs from underrepresented groups offer a basis for understanding the behavior of signing up for research registries. However, there were few differences between the groups. Implications for outreach and recruitment are discussed.

How intention to join an Alzheimer's participant recruitment registry differs by race, ethnicity, sex, and family history: Results from a national survey of US adults

“…This is consistent with current enrollment registry trends in that those with a family history of AD are more likely to enroll in registries. 11,13 The results from the present study, particularly when used in conjunction with results from our elicitation study 23 and data being collected as part of our ongoing focus groups, can serve as the foundation for developing evidence-based outreach messages using the RAA as the theoretical framework for enrollment of Black and Hispanic adults and men into registries, complementing other efforts to develop messaging to increase enrollment into clinical research studies. 8,21,31 Previous research examining the effectiveness of culturally tailored website and recruitment messages reported success at increasing interest among Hispanic adults in signing up for an online ADRD-related research registry, although less than half who completed the initial sign-up form went on to fully enroll in the Brain Health Registry.…”

“…Differences emerged primarily between White women and Black women on intentions to join when the registry required performing specific tasks. Using the RAA as the theoretical framework, these data, along with our previous elicitation results, 23 can aid in the development of evidence‐based outreach messages for enrollment of currently underrepresented groups into registries and may be helpful when designing or implementing registries.…”

“…Differences emerged primarily between White women and Black women on intentions to join when the registry required performing specific tasks. The results may be indicative of a general uncertainty about what a registry is and its purpose, hidden or surprise requirements after joining, and/or the concept of “brain health.” The results suggest that the current lack of diversity in registries may be resolvable if evidence‐based outreach messages are developed using the RAA as the theoretical framework that clearly describe the registry and the activities involved from the member's perspective rather than the broader (and perhaps vague) behavior of “join a registry.” To accomplish this, future efforts will concentrate on conducting focus groups to gather insights into the data from this survey and prior elicitation interviews 23 and to develop the persuasive recruitment messages which will be tested against current, standard registry recruitment messages in real‐world settings to determine the effectiveness of the theoretically‐derived, evidence‐based messages at increasing enrollment of individuals from historically underrepresented groups into registries.…”

“…Data were collected as part of a larger project, S tudy T o E xpand registry P articipation of U nderrepresented P opulations (STEP‐UP), to use the RAA as the theoretical model to design persuasive culturally sensitive, evidence‐based messages to enroll diverse participants into registries that connect members to AD prevention trials and other AD‐focused studies. The first step in this process was our recently reported study which conducted elicitation research to identify behavioral, normative, and control beliefs associated with joining a registry among our target audiences: Black, Hispanic, and male older adults 23 . The beliefs identified from the elicitation study were used to create an RAA quantitative survey for the target behavior of joining a registry and performing specific tasks required of online registries in the United States.…”

“…Previous semi‐structured interviews conducted using the Reasoned Action Approach (RAA) found that joining a registry would be a positive experience, would help advance science, and would be supported by their networks (family, friends). Differences among racial, ethnic, and sex groups only emerged on select elicited beliefs about joining a registry, including 1 Black and Hispanic participants were more likely than non‐Hispanic White participants to report that a “bad thing” would be being asked to participate in an experimental or invasive treatment 2 ; more Black and Hispanic participants cited “helping others” by participating in studies as a “good thing” compared to non‐Hispanic White participants; and 3 men were more likely than women to mention confronting personal cognitive decline as “bad thing” 23 …”