Structural racism plagues our society everywhere from the justice system to scientific research. Scientific and medical research, which is supposed to be free from bias, has for a long time misrepresented certain groups and led to worse health outcomes. It is no secret that people from a lower socioeconomic class have worse health outcomes, yet they are missing from much of the research behind healthcare. The burden of correcting the lack of representation should not be on the people but the scientists behind the research. This requires first understanding why POC and poorer people are missing from the research and then taking steps to eliminate the obstacles. A focus group study, “Contextualising and challenging under-representation in research in light of Cultural Trauma: a qualitative focus group and interview study” out of the UK explores some of the reasons this underrepresentation exists, finding that it mostly comes down to trust. Another study, by Caitlin M. Hudac and colleagues, demonstrates the action steps that can and should be taken in research to make sure underrepresented groups are included in research. Their study, “Dynamic cognitive inhibition in the context of frustration: Increasing racial representation of adolescent athletes using mobile community-engaged EEG methods” focuses, in part, on EEG techniques that can be used for people with textured hair but other studies from Hudac also explore how to accommodate other groups like children with sensory sensitivities.
The focus group study asked participants from “underserved” communities to engage in discussion surrounding their lack of representation in medical research. These communities are typically the ones with the worst health outcomes. The researchers took particular interest in the “cultural trauma” within these communities, saying that a long history of mistreatment and misrepresentation contributes to a lack of trust in the healthcare system. No one can blame them for this, who wouldn’t be jaded by a system that lets you and your loved ones die just because of the color of your skin or your economic status. This mistrust in the medical system translates directly to a mistrust in research as well, making people from the communities less willing to participate in research. So, what should the scientific community do? Many would agree that it’s time we started earning their trust back, and this study suggests that the best way to do so is community engagement. Hudac agrees, she described during her talk at Loyola University of Chicago the ways her team engaged with the community they were doing research in by going to high school football games.
Caitlin M. Hudac does research primarily using EEG and primarily with participants who have not been properly represented in research in the past. During her talk at LUC, she described a road trip study where she travelled around the U.S. conducting research on children with autism and how she adapted her methods to work with them. The first was that she traveled to them rather than having them travel to her, this way the EEG session would be in an environment they were comfortable in. She also described the way they adapted to fit each child’s individual needs, allowing them to stand if they wanted or doing one data collection at 5am because that was the child’s best time. In her study, “Dynamic cognitive inhibition in the context of frustration: Increasing racial representation of adolescent athletes using mobile community-engaged EEG methods” she describes way they adapted EEG methods to collect data on people with textured hair. They developed methods that allowed them to use the EEG system they already had by changing how they applied the cap and pulling hair through the cap when it was needed. For this study they also traveled to the school where the participants played football rather than having the participants come to them. Hudac emphasizes the importance of thinking about the obstacles in the way of one group being a part of research and finding ways around that. She found that transportation was one of the biggest challenges and eliminated that by going to them. She also highlighted the importance of ongoing community engagement.
From both of these studies we learn that there are a lot of steps that can be taken in the scientific community to ensure proper representation of everyone in research. It starts with building trust which can be done through community engagement which means scientists should be not only going to community events but also holding events where people in the community can ask questions and learn about research. Both Hudac and the focus group also suggest it is important to share the findings of the research with the community and make sure they understand it. Proper community-based research practices can help ensure everyone is fairly represented and may even lead to better health outcomes for those who lack representation now.
References:
(12.10.24)—Caitlin Hudac—OneDrive. (n.d.). Retrieved December 11, 2024, from https://loyolauniversitychicago-my.sharepoint.com/personal/rmorrison_luc_edu/_layouts/15/onedrive.aspx?ga=1&id=%2Fpersonal%2Frmorrison%5Fluc%5Fedu%2FDocuments%2FTeaching%20%2D%20Onedrive%2FNEUR%20300%20%2D%20Neuroscience%20Seminar%2FNEUR%20300%20%2D%20Fall%2024%2FNEUR%2F%2812%2E10%2E24%29%20%2D%20Caitlin%20Hudac%2Ffneur%2D13%2D918075%2Epdf&parent=%2Fpersonal%2Frmorrison%5Fluc%5Fedu%2FDocuments%2FTeaching%20%2D%20Onedrive%2FNEUR%20300%20%2D%20Neuroscience%20Seminar%2FNEUR%20300%20%2D%20Fall%2024%2FNEUR%2F%2812%2E10%2E24%29%20%2D%20Caitlin%20Hudac
Fryer, K., Hutt, I., Aminu, H., Linton, E., White, J., Reynolds, J., & Mitchell, C. (2024). Contextualising and challenging under-representation in research in light of Cultural Trauma: A qualitative focus group and interview study. Research Involvement and Engagement, 10, 69. https://doi.org/10.1186/s40900-024-00600-3
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