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How Systemic Bias in Research Leads to Inequity

Why neurodisparities exist in research and methods to overcome them for more equitable brain disease research

Systemic bias within medical research can result in certain groups being treated unfairly or underrepresented in studies, primarily due to factors such as race or socioeconomic status. It is important to note that bias does not always stem from intentional discrimination but is often embedded in the study design and approach to sample populations and data collection. No matter the reason, these biases lead to research findings that do not accurately reflect the larger population, ultimately perpetuating unequal access to healthcare and treatments.

Dominique Popescu, PhD, a research fellow at Massachusetts General Hospital, is the recipient of the American Brain Foundation’s 2023 Next Generation Research Grant in Neurodisparities. We sat down with Dr. Popescu for an insightful conversation about how neurodisparities impact research, how to consider past research methodologies and methods to reduce these disparities in future studies.

Neurodisparities in the Research Itself

Neurodisparities refer to the differences in brain disease diagnosis and care that exist among various social, economic, and racial groups, with a tendency to disproportionately disadvantage people of color. “Neurodisparities largely reflect historical and contemporary population differences in experiencing racism, whether it’s interpersonal racism or structural,” said Dr. Popescu. 

This acknowledgment is crucial because it challenges the common tendency to attribute disparities solely to genetic factors or individual behaviors. By recognizing the influence of racism, we can avoid assigning blame to the victim. For example, rather than assume an individual’s health worsened because they chose not to see a neurologist, we should consider other factors out of their control that might prevent them from seeing one: perhaps they don’t live near a neurologist that speaks their first language.

Why do Neurodisparities Occur In Research?

Neurodisparities in research can be attributed to structural factors that contribute to the exclusion of certain populations from participating. For example, individuals in rural areas might find it especially difficult or time-consuming to access research centers and engage in studies that are far away from where they live.

Language barriers also play a significant role, as some patients may struggle to effectively communicate with neurologists and researchers due to differences in language or healthcare literacy. One study conducted by the Alzheimer’s Association found Hispanic Americans are significantly underrepresented in Alzheimer’s clinical trials due to perceived medical bias and socioeconomic factors. For example, Hispanic Americans were more likely to be unable to miss work to participate in studies.

Dr. Popescu notes that a lack of diversity in the academic community also affects research outcomes. “Black Americans are underrepresented in neurologic research, but also in academic leadership positions,” she said, pointing out that there might not be a single Black person involved in a research project, from study design all the way to participant recruitment. “Having a lack of representation at every single step along the way results in a lack of inclusion. It’s exclusionary from the beginning,” she said.

How to Reduce Disparities in Research

The existence of bias doesn’t mean that we need to throw away decades of traditional research. Instead, we can change the lenses we use to interpret past research and embrace new methods as we move forward. 

Acknowledging Disparities and Bias

Dr. Popescu views acknowledgement as the first step in reducing disparities in research. For example, we can dismantle the idea of “colorblindness,” or treating all races and ethnicities the same, in research. She also underscores the significance of using an anti-racist framework when designing and interpreting research studies to address explicit bias and implicit or unconscious bias. For example, when reviewing older literature she always asks herself, ‘Who was in the study? Who are the findings most likely to help?’ Dr. Popescu believes that by adopting an anti-racist approach, researchers can challenge the status quo, dismantle discriminatory practices, and promote equity in brain disease research.

Community-Based Participatory Research

Community-Based Participatory Research (CBPR) is an approach that aims to improve the engagement of underrepresented populations in medical research. Unlike the traditional research approach, in which the researcher develops the idea and then reaches out to the community, CBPR flips the model by involving the community from the very beginning.

“It’s an approach that can help overcome a lot of the mismatches between researchers’ goals and methods and the needs of the community, and of course, other marginalized groups,” said Dr. Popescu. CBPR creates an opportunity for community members to participate in the development of interventions and implementation strategies, increasing the relevance and impact of research efforts. Moreover, this approach fosters a shared responsibility and improves the relationship between researchers and the population they aim to assist.

Studying Neurodisparities Themselves 

It’s vital to support research that examines disparities in healthcare and methods to overcome the barriers. In the Autism Spectrum Disorder (ASD) space, Latino children are consistently diagnosed at older ages than their white peers, partly due to the lack of language-appropriate and culturally relevant diagnostic tools. In 2022, Audrey Brumback, MD, PhD, was awarded an American Brain Foundation Next Generation Research Grant to study a new diagnostic tool developed for this population. The Criteria Diagnostic Interview (CRIDI-ASD/DSM-5) was developed in Latin America as a culturally relevant and language-appropriate tool for ASD diagnosis. If validated in the United States, CRIDI has the potential to become a widely used assessment tool for clinicians to diagnose ASD in Latino children.

This study demonstrates the importance of identifying disparities, understanding their underlying causes, and working towards solutions that promote equity and improve outcomes for marginalized populations.

By acknowledging bias and adopting anti-racist frameworks, the scientific community has the opportunity to transform the research process and make it more equitable. An essential part of the American Brain Foundation’s core values is championing equity in brain disease research; we award an annual Next Generation Research Grant in neurodisparities to a project designed to improve how we understand and address health disparities. It is only through this inclusive approach that we will move closer to our vision of life without brain disease — for everyone.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or make a gift to support groundbreaking brain disease research.