Black women are at the highest risk of developing Alzheimer’s disease. This progressive condition is not only twice as likely to affect Black older adults than their white counterparts, but older women are twice as likely to be diagnosed as men, irrespective of race or ethnicity. 

Yet, according to research presented at the Alzheimer’s Association International Conference in Philadelphia, only 5% of Black Americans are included in clinical observational studies, and only 1% to 3% of Black Americans are included in clinical drug trials.

It’s crucial that journalists assess the representation of participants when reporting on research studies, including, as appropriate, race, ethnicity, gender, sexual orientation, or other factors which may relate to outcomes. It may not always be obvious, so ask the study author if the cohort(s) paint a true picture of those affected by the disease, condition, treatment, or policy being assessed. If not, why? 

“Women, and specifically women of color, are underrepresented in clinical trials, limiting biological understanding and contributing to health inequities and social injustice. Analyses of barriers to inclusion suggest practical interventions that together create a roadmap of specific and actionable steps to increase diverse representation in research and sustainable change,” wrote Barbara Bierer, M.D., in a 2022 study. Bierer is a professor of medicine at Harvard School of Medicine and faculty director of the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard in Boston, who was not involved in the Alzheimer’s panel.

The study

Restrictive study exclusion criteria and medical mistrust are pervasive barriers to research participation in minority communities and are often disregarded during the development of a research study. Researchers from UC San Diego and UCLA are working to address common participation challenges in underrepresented groups as they recruit participants for a new observational study, by using multiple frameworks, rather than a single approach.

The Black Women Inflammation and Tau Study, known as B-WITS, aims to identify biological and social risk factors for Alzheimer’s disease in Black women, with the goal of improving health outcomes. 

Using multiple compatible approaches to study design and partnering with trusted community leaders allowed the research team to develop culturally informed and effective recruitment strategies, according to Joy Stradford, M.S., a doctoral student at UC San Diego, who presented the unique recruitment approach at the conference.  

Their goal is to recruit 100 women — 50 in San Diego and 50 in Los Angeles — that are at least 60 years old. Recruitment began in spring 2024.

We must dispel the myth that historical abuses are the primary driving factor for research underrepresentation of Black African Americans, taking the onus off of participants for self excluding, and acknowledge that biased research practices have intentionally and inadvertently excluded minoritized communities of color.

Joy Stradford, M.S.

Better representation through combined approaches

No one research framework fully captures the breadth of all health disparities, but integrating several frameworks can create more robust representation of communities of color. The B-WITS study uses elements of  the Community-Based Participatory Research and the National Institute on Minority Health and Health Disparities Research frameworks to:

  • Create a diverse multidisciplinary research team including Black neuropsychologists, neuroscientists, nurse practitioners, and scholars working together to address participants needs.
  • Establish community reciprocity by providing education outreach to the community and communicating procedures, results, and providing health data to participants. Disseminate digestible results based on factors like education and health literacy.
  • Build trust through community partnerships with Black community organizations and through routine consultation with a representative Community Advisory Board.
    • Community stakeholders have been a part of the decision-making process throughout the entire development of the study and will continue to be a part of of the process throughout the duration of the study.
    • Advisory board input resulted in offering higher compensation amounts to participants, lowering the participating age to 60, rather than 65, and creating a health dashboard to share blood tests and other results with participants.
  • Reduce barriers to participation
    • Use minimally invasive blood draws to study Alzheimer’s disease biomarkers.
    • Find convenient locations within predominantly Black communities for in-person study visits, like churches, community centers and senior centers, to help ease transportation barriers and minimize travel time. 
    • Limit number of required in-person visits as part of the study protocol, further reducing time and logistical barriers.
  • Acknowledge health conditions in minority groups.
    • People with chronic conditions like diabetes are often excluded from participating in Alzheimer’s disease studies, yet diabetes affects nearly one in eight Black American adults. This results in disproportionate exclusion from these studies. By adopting broader eligibility criteria, B-WITS hopes to combat this systemic problem.
  • Assess engagement on an ongoing basis. Look at what’s working and what isn’t working so well.
  • Select and assess culturally appropriate social determinants of health, rather than use measures that may not be applicable to this group. 

To date, more than 150 people have expressed interest in participating in the study, according to Stradford. The methodology and study design are detailed in a forthcoming paper, “Increasing Research Study Engagement in Minoritized Populations: An Example from the Black Women Inflammation and Tau Study” (in press), in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.

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