Overcoming Science’s Racialized Stigmas with Engaged Research
How can researchers overcome stigmas in science toward communities of color? And how can we establish partnerships that are valuable to everyone involved?
Speaking today at the Cornell Communication department is Dr. Robin Stevens (@drrobinstevens), a health communication scholar focused on achieving health equity in African American and Latinx communities in the US. Dr. Stevens uses digital epidemiology to investigate sexual health, mental health and substance use in the context of the digital neighborhood. She uses interdisciplinary community-engaged approaches to improve the health and well-being of youth of color. Dr. Stevens is an Associate Professor of Communication at the Annenberg School for Communication, USC and the Director of the Health Equity & Media Lab.
Robin opens by telling us about a billboard posted by the Chicago Department of Public Health that overlapped the face of a black child with the phrase “I am an outbreak.” In response, the community over-wrote the billboard with the word “beautiful.” Robin tells us that as organizations target research and health campaigns toward communities of color, even well-meaning researchers can re-stigmatize communities.
Over and over, public health organizations have a tendency to see communities of color as a “problem” or “at-risk.” How does this happen? When individualist views of public health combine with stigmatization, Black and Latinx people can be seen as a problem. For example, many people assume that youth of color engage in more risky sexual and substance behaviors, even though empirical work hasn’t found many differences (Hallfors et al 2007; Harper et al 2018). Consider the COVID-19 pandemic for example, Robin asks — the well-documented disparities by race and ethnicity in health outcomes are not primarily due to individual behaviors like mask wearing. These health disparities arise from more fundamental structural problems, but when we frame them as individual problems, we re-stigmatize communities.
Communication scholarship also lags in its coverage of youth of color, says Robin. Even though communities of color lead cultural innovation on platforms like Twitter and TikTok, the owners of the platforms and the scholars who study them tend not to focus on or amplify those innovations. The same pattern applies across fashion, sport, and other areas of cultural production. These patterns contribute to communities’ stigmatization as problems rather than innovators.
In her talk today, Robin promises to ask how can scholars move beyond the problem of stigmatizing and harming communities that they serve. First, Robin says that researchers can generate evidence to show how communities of color are using technology to advance health equity. Second, researchers can orient their work toward action.
Community-Engaged Research
Community Engagement, says Robin, is a process of research where you are accountable to the community you’re working with. It involves listening to multiple voices in the community. It involves shifting priorities from your scholarly goals to include community goals. Ultimately, it involves creating a partnership.
How can scholars navigate the needs of communities with the goals that they have as scholars, especially when funders don’t always care about community priorities? Robin talks about community collaboration in terms of family. By joining in to the community, participating in conversations, and listening, researchers can build lasting relationships that produce meaningful research.
Robin tells us about a project she did with communities in Camden, New Jersey. She showed up, joined events, listened to people, helped out as needed, and eventually developed research ideas over time. Robin came to the community thinking she would be doing research on sexual health. What she realized over time was that people wanted to talk about the idea of the “digital neighborhood.”
As she spent time with people in Camden, Robin learned that people lacked public third spaces where they could meet up and create a shared community and identities. So they created digital neighborhoods where people connected with community, news and information. That wasn’t necessarily a good thing. Many young people described Facebook as a place of danger and negativity, where they would find out about funerals, pregnancies, and bad news. Yet they also shared substantial health information and advice with each other.
Involving Communities in Content Analysis
Robin tells us about another study, where roughly 50 youth of color participated in sexual health surveys and also shared their full data from Tweets and Facebook posts (paper here) . In the study they worked to correlate data from social media with the public health survey. To interpret high school students’ social media feeds, they recruited students from the community to analyze thousands of posts, mentored by college students. Robin points out that for this project, it was essential to have participants involved in the content analysis process. Quantitatively, they found few correlations between online behavior and public health behavior. In their follow-up qualitative analysis, they found many examples of people sharing public health information on social media, as well as cases of people pushing back against stigma.
Robin also tells us about a case of “digital epidemiology” that combined community knowledge with machine learning (Roszkowska et al 2020). In this study, she worked with computer scientists to study discussions about HIV prevention on Twitter by young men in the US. In this study, insights from students in the social context of the study were incorporated into a machine learning model. The researchers then correlated aggregate outcomes from the model with public health outcomes by region.
Moving from Research to Action
Finally, Robin talks about ways to move from research to action. Her lab routinely goes back to communities, shares findings, seeks their feedback, and distributes the results. In the longer term, Robin hopes to see more public health researchers develop interventions alongside communities that build on the innovations that Black and Latinx communities are already making.
