10 ways to boost participation of Black Americans in Alzheimer’s research
When offered opportunities to participate in research seeking biomarkers for Alzheimer’s disease, Black adults are considerably more likely than White peers to balk or decline.
Motives for the hesitancy are several—transportation concerns, informational inadequacies, historical wrongs—but effective resolutions can be quite simple.
Researchers at Indiana University quantify the challenge and suggest ways to meet it in a study published June 5 in Alzheimer’s & Dementia: Translational Research & Clinical Interventions [1].
Surveying 400 Black and White Americans 55 and older, lead author Johanne Eliacin, PhD, corresponding author Angelina Polsinelli, PhD, and colleagues found the former more likely to express reluctance than the latter, 29% vs. 15%.
Common concerns included general unease over medical research and, interestingly, specific impedances to acceptance of brain imaging.
For MRI, the hesitant Black survey respondents named as top discouragements not having enough information about what the scan would entail, unfamiliarity with the healthcare workers performing the scans and not knowing what would be done with any clinical findings.
For PET, the subgroup’s concerns centered on safety.
Analyzing the responses for stated or implied solutions, Eliacin and co-authors found many hesitant respondents might be more willing to join such studies if doing so would bring actionable information about their individual health status, particularly regarding risk of Alzheimer’s.
Regarding strategies to boost Black older adults’ participation in Alzheimer’s disease biomarker research, the team offers some detailed recommendations for researchers. Among the readily feasible:
Outreach/engagement:
1. Connect with local community centers, gathering places and organizations to establish strong relationships prior to attempts to recruit individuals for studies.
2. Connect with primary care providers in predominantly Black communities to facilitate buy-in about the importance of inclusion in Alzheimer’s disease biomarker research.
3. During community talks, focus on information about brain health and dementia prevention, the research process and historical mistreatment of Black individuals in medical research. Also emphasize participants’ right to withdraw from a study at any point.
Recruitment:
4. Ask primary care providers to discuss research opportunities with their patients who have cognitive impairment, regardless of demographics.
5. Provide transportation vouchers and assistance, gas cards, grocery cards, childcare options, etc., to minimize cost to participants. For longer study visits, supply refreshments and/or meals.
6. Provide clinically actionable results quickly, offer to send results to primary care provider, supply general information on brain health and invite questions.
7. Appoint a member of the study staff to serve as participants’ point person for the duration of the study.
Retention/continued engagement:
8. Maintain relationships with members of the local Black community.
9. Demonstrate that there is a reciprocal relationship between community and researchers and that researchers are invested in the community's health and wellbeing.
10. Emphasize researchers’ desire to help the community develop trust in researchers, assist in dispelling myths about goals of research, continue efforts to destigmatize Alzheimer’s diagnosis, encourage people to see their doctors as soon as concerns arise.
Eliacin and co-authors cite prior research establishing that Black older adults are twice as likely as White older adults to develop Alzheimer’s disease and related dementias but significantly less likely to participate in studies of the brain.
The reasons for this reluctance are complex, the authors comment, but understanding them is “essential for inclusion and representation in Alzheimer’s research. Barriers specifically to biomarker research is especially important for addressing equitable application of early detection models and precision medicine.”
The study is available in full for free.
Dave P. has worked in journalism, marketing and public relations for more than 30 years, frequently concentrating on hospitals, healthcare technology and Catholic communications. He has also specialized in fundraising communications, ghostwriting for CEOs of local, national and global charities, nonprofits and foundations.