Dialogues

A Focus on Topics in Neurology, Neuropsychology, and Neuroscience through the lens of Diversity, Equity, and Inclusion

November 24, 2021

Photo of Carolyn Barley Britton, MD
Dr. Carolyn Barley Britton

Dialogues is pleased to share this piece authored by Dr. Jennifer Manly, a renowned neuropsychologist and leader in health equity in Alzheimer’s disease and cognitive aging research. The remarkable challenge for academic centers who are world leaders in medical research and care, including our own, is to address the glaring shortcomings in community inclusion exposed by the pandemic. There are new programmatic initiatives at every level of our institution to address this challenge. Dr. Manly discusses the successful efforts of the Taub Institute to build robust, foundational community engagement that assures diversity across many measures. She also clearly explains the impact of exclusion on research findings and conclusions. Thanks to Dr. Manly for her outstanding work, and for permission with the Taub to share this post.

Carolyn Barley Britton, MD, MS
Chief Diversity Officer
Department of Neurology


Photo of Jennifer J. Manly, PhD
Dr. Jennifer J. Manly

Traversing the Aging Research and Health Equity Divide: Toward Intersectional Frameworks of Research Justice and Participation

Researchers at the Taub Institute are well known for conducting Alzheimer’s Disease and related disorders (ADRD) and cognitive aging research that is inclusive of racially, ethnically, and socioeconomically diverse populations, and that prioritizes partnerships with the community of Washington Heights, Inwood, Hamilton Heights, and Harlem. These partnerships have been buttressed by methodologically rigorous, theoretically informed strategies to foster participation and communication, as well as considerable investment of resources and time. Underlying our approach is the belief that inclusion of minoritized communities in ADRD research is fundamental to rigorous science and critical for reducing the burden of cognitive impairment and dementia on our society.

Our Institute’s emphasis on representativeness in AD research is more of the exception than the rule; older adults who belong to racial and ethnic minoritized communities are perpetually under-included in aging research, especially AD research and AD clinical trials. This has serious implications for what we know about potential AD treatments: for example, Biogen reported that in the safety and efficacy trials for aducanumab, only six (6) Black people were randomized to the high treatment dose that was recently approved by the FDA. It is not just clinical trials that show disparities in inclusion: lack of diversity in all aspects of AD research may limit what we know about the relationships of social determinants of health to neuropathology and memory loss.

Figure 2 The participant and relationship-centered research engagement model
Figure 2. The participant and relationship-centered research engagement model. See full figure.

In a recent forum article in the Gerontologist, I collaborated with Dr. Andrea Gilmore-Bykovskyi from the University of Wisconsin, Madison and others to encourage a robust discussion about the Science of Inclusion and to conduct a critical analysis of inclusion of racial and ethnic minoritized communities in aging research. We drew attention to conventional research recruitment practices and deeply entrenched norms that create barriers to recruitment and retention of participants from minoritized backgrounds. The article also questioned why systems and structures of recruitment are so commonly designed around White, English-speaking, resourced populations as a prioritized, referent norm.

There is good news and a path forward for a more inclusive AD science: the article highlights social justice-informed approaches to research engagement that emphasize reciprocity, investment, empowerment, and sustained bidirectional relationships. A key component of these approaches is that they emphasize research readiness, with the goal of “leaving people open” to research rather than only seeking participation. These approaches need to be implemented well before recruitment efforts begin, requiring planning, commitment, and resources, and as a result, institutions and funders will play a critical policymaking role in contributing to more including and equitable ADRD research.


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