A community-engaged approach can help address bias and lack of diversity/inclusion in neuroscience research

Until recently, psychologist Kalina Michalska had never used community-based participatory research, or CBPR, in her work, but now she can’t imagine not using it.

CBPR, which dates to the early 1930s, is an intensive research approach that involves partnerships between researchers and community members throughout the research process, giving communities a voice in how research progresses and empowering them to use the results more effectively.

The study led by Michalska, an assistant professor of psychology at the University of California, Riverside, is published in the journal Frontiers in Integrative Neuroscience and is part of a special issue on equality and diversity in neuroscience research. The study began with a focus on the neural bases of disruptive behavior disorders and conduct problems in Latina youth, building on Michalska’s previous work.

However, through talking to families, Michalska’s team found that the issues being investigated were more nuanced than behavioral disorders.

“We learned that what girls in our community were struggling with instead was heightened panic and separation and social anxiety,” Michalska said. “We then reassessed the aims of our study to prioritize these concerns. An important aspect of community-engaged research is the condition that community members work with researchers as equal partners and shape the research they are a part of.”

“I am now such a supporter of CBPR that I will not go back to not using it,” Michalska said. “When you listen to the community and give its members a voice about their own lived experiences, you prioritize the problems the community has, not the problems researchers think the community has. CBPR treats participating community members as experts, and it better reflects the needs of the community. And because CBPR not only advances science but also improves society, it’s an opportunity for researchers like me to give back to society.”

According to Michalska, had her research team not incorporated a CBPR approach, many of the team’s ongoing research lines would not exist. Now, her team shares with participating families a biannual newsletter produced by the Kids Interaction and Neurodevelopment (KIND) Lab at UCR, which Michalska directs, as well as findings in layman’s language, on relevant published research articles and conference proceedings.

Michalska said CBPR asks: how will the lives of people in communities be affected by a specific piece of research, and do those people have a voice in whether and how the research will be done? She explained that psychology and neuroscience have not typically used CBPR.

“However, as magnetic resonance imaging and other neuroscience techniques become more incorporated into the mental health research agenda, it is incumbent upon neuroscientists to pay close attention to diversity and representation in their work. Unfortunately, in neuroscience, many discussions around these issues today do not involve the community under investigation.”

Neuroscientists’ research questions, hypotheses and methods may have unrecognized biases, Michalska said.

“We need to open channels of communication and check in with our research participants to help minimize such biases,” she said. “Already, neuroscience research severely underrepresents marginalized groups as study participants; Black, Latina, and other women of color are conspicuously absent. Such exclusion directly harms communities and prevention and intervention approaches, such as medical protocols, mental health recommendations, and the creation of government policy, can become biased. CBPR can be a means and facilitate impactful change in neuroscience.”

Michalska believes that socially engaged research can increase public trust in science and the scientific process.

“Community inclusion in research design and interpretation can be a powerful learning opportunity for community members to experience first-hand how research is conducted,” she said. “This could especially empower young people.”

Next, Michalska’s team plans to incorporate youth voices into its research and interact more closely and strengthen partnerships with local communities.

“Going forward, whenever possible, we plan to include measures in our research that are developed from the perspective of participating communities, including measures that address systems of inequality,” she said.

Michalska and Mullins were joined in the study by graduate students Shayna La Scala of UCR and Rengin Firat of the Korn Ferry Institute. Firat was an assistant professor of sociology at UCR when the study was conducted.

The title of the research paper is “Equality, Diversity, and Inclusion in Developmental Neuroscience: Practical Lessons from Community-Based Participatory Research.”

Provided by University of California – Riverside