Factors influencing Blacks and Whites’ participation in Alzheimer’s disease biomarker research

Abstract

INTRODUCTIONAlzheimer’s disease (AD) is a public health priority. AD biomarkers may vary based on race, but recruitment of diverse participants has been challenging.METHODSThree groups of Black and White participants with and without prior research advocacy or participation were interviewed individually or in focus groups to better understand perspectives related to AD biomarker research participation. Thematic analytic approach was used to analyze the data.RESULTSIdentified barriers to AD biomarker research participation included hesitancy due to fear, distrust of research and researchers, lack of relevant knowledge, and lack of research test results disclosure. Drivers for engagement in biomarker research procedures included knowledge about research, AD, and related clinical procedures, perceived benefits of participation, and outreach from trusted sources.DISCUSSIONParticipants’ comments related to the need for diversity in research and desire for results disclosure suggest opportunities to engage Black individuals.

Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults

“…Several Black participants discussed how misconceptions about research due to past historical trauma and structural racism contribute to hesitancy. Systems of social oppression that create unequal access to education, healthy living conditions, and quality health care influence Black adults’ attitudes toward, knowledge of, and experience with biomedical research 24 . In their narratives, participants specifically called for researchers to address past traumas and increase attention to Black participants’ basic needs, including better access to health care to facilitate trust and capacity for research participation.…”

“…The mixed‐methods design offered opportunities to evaluate contextual factors such as culture, participants’ perceptions, values, and beliefs qualitatively. This study was part of a larger research project—Promoting Cultural Awareness and Diversity in Research about Alzheimer's Disease and Cognitive Health (AD‐REACH) 24 —aiming to generate targeted and culturally sensitive recruitment materials for Black older adults to increase recruitment into AD biomarker studies.…”

“…This study was part of a larger research project-Promoting Cultural Awareness and Diversity in Research about Alzheimer's Disease and Cognitive Health (AD-REACH)24 -aiming to generate targeted and culturally sensitive recruitment materials for Black older adults to increase recruitment into AD biomarker studies. AD-REACH is a three-phase mixed-methods research design involving the development of a novel survey (Phase 1), survey administration (Phase 2), and qualitative interviews (Phase 3; Figure1).…”

Differences in Motivators, Barriers, and Incentives between Black and White Older Adults for Participation in Alzheimer’s Disease Biomarker Research

“…The AD-REACH survey was designed by conducting a series of focus groups and semi-structured qualitative interviews with racially diverse participants that included IADRC CAB members, IADRC study participants, and community-dwelling civilians and veterans [21]. Based on the themes identified from these interviews, we developed a preliminary version of the AD-REACH survey that we tested with a different sample of 10 individuals who met the same inclusion and exclusion criteria listed above.…”

“…This cross-sectional study involved survey data collected from community-dwelling older adults who met study eligibility criteria, including: 1) Identified as non-Hispanic White or African-American/Black (including biracial or multiracial), 2) age ≥ 55 years, 3) resided in the Indianapolis-Carmel-Anderson metropolitan area as defined by the Census Bureau Statistical Area map, and 4) had never participated in an Alzheimer's disease research study. The AD-REACH survey was designed by conducting a series of focus groups and semistructured qualitative interviews with racially diverse participants that included IADRC CAB members, IADRC study participants, and community-dwelling civilians and veterans [21]. Based on the themes identified from these interviews, we developed a preliminary version of the AD-REACH survey that we tested with a different sample of 10 individuals who met the same inclusion and exclusion criteria listed above.…”