Representation in research
by Ashley Douglass
Demographics are the specific characteristics or qualities that describe people within a given population. This can include age, sex, education, income, race, nationality, ethnicity, or religion. In an ideal world, these factors should not influence the quality of medical care one receives. This is an unfortunate reality though, as there has been a historical pattern of racial and ethnic minorities receiving lower-quality care than that of White people, leading to greater incidence for ethnic and racial minorities to experience illness throughout their lifetime.
After generations caught within this negative feedback loop, researchers and policymakers have become aware of the problem. There is a new movement towards developing an inclusive medical community, in which everyone can be equally cared for. As medical practices rely heavily on discoveries from basic research, it is essential for researchers to adjust how they present their findings.
The National Institute of Health (NIH) is a government agency in the United States that continuously works to improve wellness through public health research. Their mission statement reiterates their powerful movement: “[The NIH’s] mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.” Studies funded by the NIH require you to fill out the questionnaires mentioned earlier when collecting data, so they can generalize findings to all demographics.
Generalizing research data to diverse populations is a big task, with challenges stemming from getting participants to come to the lab, the inability to control for every confounding variable, and limited resources to surmount these barriers. This is even harder to achieve when the broader research community is unsure who exactly participated in the study, as studies typically only publish the experimental data.
So, even though researchers may collect demographic data about their participants, it’s not mandatory for them to share that information with their data. This means that unless the study is directly assessing how demographics (age, sex, race, ethnicity) relate to the questions they ask, it’s unlikely that you’ll find detailed information about the participants in the published paper.
In 2017, the NIH required that all studies that they fund must outline plans for how they will include women and other minority populations in their research. This is a huge step in the right direction when it comes to representation, as before there were no baseline expectations for purposefully including people with diverse backgrounds in research studies.
There is linguistic and cultural variation across different racial and ethnic groups that can be easily overlooked when not factored into research studies. The fields of cognitive science, psychology, and speech, language, and hearing science are still trying to understand how demographic variation relates to questions they’re asking.
Yina Quique, a current postdoctoral scholar at Northwestern University, is dedicated to researching culturally-sensitive interventions tailored for individuals from diverse backgrounds.Quique shares her thoughts on representation through her research experience by noting:
“I’ve seen some increased representation for the sake of increasing representation…it’s almost like you get a checkmark. And that is not enough. Instead, we need to really focus on specific populations and adapt treatment assessments for those specific populations, rather than just come with the same project for everyone.”
This emphasis on representation and inclusivity isn’t just about meeting regulatory requirements. It is about recognizing that diverse perspectives and experiences, including those affected by conditions like aphasia, influence how we interact with the world. Black Americans are remarkably underrepresented in aphasia research, despite being twice as likely to experience a stroke and its associated consequences.[1] This massive oversight of this population has raised concern within aphasia research and other advocacy groups.
Part of the challenge in correcting this egregious neglect is that only 30% of aphasia treatment research reports include information on race and ethnicity.[2][3] Further, the demographic composition of participants in aphasia research rarely provides a fair and comprehensive reflection of the diversity within minority communities, amplifying the existing gap in knowledge, calling into question if previous findings are still relevant. Successfully tailoring language treatments for those with aphasia depends on including people from different racial and ethnic backgrounds to understand the disorder and its management more fully. If we involve a wider range of people in research, we can develop treatments that work better for everyone.
At UConn, we have a lot of opportunities for research, and many of us are actively addressing under-representation. Many language researchers on campus are doing studies funded by the NIH (including the head of the Language and Brain Lab, Emily Myers), including graduate students that receive NIH funding to learn how to increase representation in research. It’s crucial for research environments to prioritize the inclusion of women and minorities, and is especially important to ensure that aphasia research reflects the diverse experiences and needs of all individuals affected by the disorder, leading to the most effective and inclusive treatment strategies.
So, you may ask yourself, what can you do? The next time you’re in a doctor’s office, reflect on the importance of representation and consider participating in research initiatives. Participants are the first step in advancing our understanding of various health conditions and how to best manage them. Your involvement in research can pave the way for groundbreaking discoveries and improved healthcare outcomes for everyone.
Your actions today can shape the future of healthcare for generations to come.
Sources
[1] The National Institutes of Health (https://www.nih.gov/)
[2] The Centers for Disease Control (https://www.cdc.gov/index.html)
[3] Nguy, B., Quique, Y. M., Cavanaugh, R., & Evans, W. S. (2022). Representation in Aphasia Research: An Examination of U.S. Treatment Studies Published Between 2009 and 2019. American Journal of Speech-Language Pathology, 31(3), 1424–1430. https://doi.org/10.1044/2022_AJSLP-21-00269