Irsay Institute fights mental illness stigma through research, local and national partnerships

Mental illnesses are one of the most prevalent health care issues in the United States. One in 5 U.S. adults is living with one. For youths, more than 1 in 6 will have experienced a mental illness. Stigma can often hold them back from finding the help they need.

Indiana University’s Irsay Institute is tackling stigma head on.

The Irsay Institute was launched in 2021 by a $3 million gift from the Jim Irsay family, owners of the NFL’s Indianapolis Colts. The institute hosts over 50 faculty, scholars, graduate student fellows, staff and advisory members from IU Bloomington, IU Indianapolis, IU School of Medicine, and universities and organizations across the country.

The institute catalyzes transdisciplinary research at the intersection of health and social sciences. Led by IU faculty members Bernice Pescosolido, Brea Perry and Kosali Simon, the institute works in lockstep with key partners, the state of Indiana, national organizations and local communities to promote and provide better health care.

In conjunction with the Irsay family, the institute’s priorities closely align with the Colts’ and Irsay family’s Kicking The Stigma initiative. Launched in 2020, the initiative raises awareness about mental health and aims to end the stigma associated with mental health disorders.

“The work of the Irsay Institute is vital to researching, measuring and combating the stigma surrounding mental health,” said Kalen Jackson, Vice Chair and Owner of the Indianapolis Colts. “We are grateful for their continued partnership and incredible impact in this space.”

Decades of transformative research

While the Irsay Institute is one of Indiana University’s newest research institutes, its faculty researchers have had a positive impact on the health of Hoosiers and people across the country for decades.

Pescosolido, Distinguished Professor of Sociology in the College of Arts and Sciences at IU Bloomington, is an internationally recognized sociologist. Her research focuses on how social networks and culture provide valuable insights into health, illness and healing. Pescosolido’s more than four decades at Indiana University have transformed public perception on mental health.

In the early 1990s, she developed the Network Episode Model, a widely used framework that views seeking mental health resources as a social process managed by community social networks, the treatment system and social service agencies. Later that decade, Pescosolido initiated the first national study of mental health stigma in the U.S. in over 40 years, producing groundwork for several U.S. governmental reports on the topic.

Indiana University’s Indiana Consortium for Mental Health Services Research was founded by Pescosolido to unify academic researchers, government leaders and advocates to study communities and their mental health treatment systems.

Pescosolido was elected to the National Academy of Sciences in 2021. She is also an elected member of the National Academy of Medicine and serves on its governing council. Recently, she gave opening remarks and presented research at the World Psychiatric Association’s Together Against Stigma conference in Iceland.

“Mental health is not a new problem,” Pescosolido said. “But for years it’s been buried by stigma and misunderstanding. When we can advance the knowledge associated with mental illness, growing the resources available and equipping professionals with the tools needed to make an impact, we are better suited to open doors to better care.”

With the shared goal of the Irsay family, Pescosolido wanted to establish the Irsay Institute to create one of the world’s leading centers for mental health research.

Increasing isolation, lack of strong social networks

Understanding social exclusion is a central research focus of the Irsay Institute.

According to a recent report from the U.S. surgeon general, Americans are spending less time together. Rates of loneliness and isolation increased across age groups, but young adults are twice as likely to report feeling lonely.

Perry, associate director of the Irsay Institute and professor of sociology in the College of Arts and Sciences at IU Bloomington, published a study finding that a strong social network can promote resiliency to common mental health challenges during periods of crisis, particularly among young adults.

Research from Anna Mueller, senior research leader at the Irsay Institute and associate professor of sociology in the College of Arts and Sciences, studies suicide clusters. In April, Mueller released “Life Under Pressure: The Social Roots of Youth Suicide and What to Do About Them,” a book that offers the first in-depth look at why U.S. suicide clusters occur and how to stop them. Of the several insights offered in the book, Mueller said one of the main takeaways is that everyone needs to be comfortable talking about mental health topics and asking important questions without stigmatizing.

Emphasizing connectedness and eliminating stigma

College students experience a whirlwind of challenges. Whether it’s adjusting to a new environment, making friends or managing workload and stress, these challenges can be emotionally taxing on young adults. Institutions play a particularly important role in creating a culture of well-being, and the Irsay Institute is bridging that gap at IU.

“It doesn’t bother me that kids come to my class in their pajamas and fuzzy slippers,” Pescosolido said. “What bothers me is they’re not coming out of their room.”

To foster connectedness, Pescosolido crafted the student-led U Bring Change to Mind, a national pilot to develop a college program. Started in 2014, the program aimed to reduce stigma associated with mental illness on the Bloomington campus, and it launched on all the IU regional campuses in 2023. The program was recently awarded a grant from Kicking The Stigma to revive campus culture through emphasizing mental health. 

U Bring Change to Mind is a college campus partnership with actress Glenn Close’s nonprofit, Bring Change to Mind, which creates and advances approaches and partnerships to start conversations around mental illness. Based on the philosophy of “By Students, For Students,” the campus initiative created space for students to host activities that build connections and share mental health resources.

The initiative was accompanied by a study, which found significant reductions in the stigma of among students. The most change was reported by those who participated in activities like escape rooms and scavenger hunts sponsored by U Bring Change to Mind.

The U Bring Change 2 Mind program is “ready to go,” Pescosolido said. The program, with some infrastructural support, could be offered free to charge to any college or university who wants to see their campus as “safe and stigma free.”

“IU has the potential to be a model and center of college mental health as we continue to fight the effects of the COVID-19 pandemic, the stressors that emerging adults face and the challenges of the future,” Pescosolido said.

Harnessing the power of AI in mental health

Keeping the momentum of lowering stigma on college campuses, the Irsay Institute is experimenting with emerging technologies to raise students’ mental health literacy.

Researchers at the institute, the Kelley School of Business and the School of Public Health-Bloomington are piloting an app that can track behaviors, like sleep, and mental health concerns, like anxiety and depression.

Edlin Garcia Colato, assistant professor in the School of Public Health-Bloomington, and Sagar Samtani, associate professor in the Kelley School of Business in Bloomington, are leading the project with the Irsay Institute. Undergraduate and graduate students from the Kelley School’s Data Science and AI Lab are also playing a major role in the app’s strategic development.

Such digital interventions can remove pain points often associated with traditional mental health assessment methods. The app’s goal is to limit the challenges students face in recognizing and seeking help for mental health issues.

Difficulty of recalling symptoms over a period of time can hinder people from recognizing patterns. Passively collecting data through users’ phones to track indicators of mental health changes reduces the burden on individuals to remember and report their symptoms.

“There is no major time gap in terms of when the data are passively being collected through their phones,” Garcia Colato said. “It’s able to capture movement, sleep cycle, all these different characteristics that are typically associated with changes in one’s mental health, versus putting the onus on the individual to remember weeks later, ‘Has my sleeping behavior changed?’”

The app will integrate user-collected data to provide self-monitoring capabilities and serve as an intervention tool. The data will aid in training its machine learning and artificial intelligence models to better predict issues before they occur. While the app is intended for university students, it ensures students’ privacy by prohibiting institutions from identifying individual users through its data.

“We’re double encrypting and anonymizing the data so no one can access someone else’s, and a particular individual cannot be easily identified.” Samtani said. “Privacy is something that we’ve identified as being one of the key elements on the onset of the project, so it’s important to ensure we’re keeping compliant with the appropriate regulations.”

In partnership with U Bring Change to Mind, the app researchers plan to recruit 1,200 first-year students over age 18 at events held during IU Bloomington’s Welcome Week.

Empowering mental health clinicians across the state

Reciprocal innovation is something that IU and the Irsay Institute do well, given their strong network of research partners abroad.

This kind of innovation occurs when research developed abroad is taken back to Indiana to address issues. Using the Gamechangers model, Hank Green is looking to eliminate stigma, increase knowledge and change behaviors among Indiana mental health clinicians.

Green is a continuity lead at the Irsay Institute and associate professor at the School of Public Health-Bloomington. The Gamechangers model, born out of Green’s HIV and cervical cancer research in Uganda, uses peer advocacy to encourage others to consider preventive behaviors.

“Gamechangers was developed to take HIV-positive individuals in Africa and train them to be advocates in their own social networks,” Green said. “Research shows that people who have benefited from treatment — not just HIV, but people who have seen great health improvements after any sort of medical treatment — are incredibly motivated to talk about it.

“We’re harnessing the energy of people who have seen success in some sort of medical treatment and then giving them the skills they need to be lay advocates for the same kind of treatment that they were looking for.”

Currently, Green and a team of researchers in IU’s Department of Psychological and Brain Sciences in the College of Arts and Sciences are piloting a Gamechangers program for clinicians confronting substance use disorder among Indiana youth. According to Green, very little substance use treatment is being delivered to adolescents, despite the need for it. In most cases, clinicians focused on substance use disorders only have experience working with adults, and pediatricians aren’t taught addiction medicine.

The Gamechangers model would empower health care professionals who have had successes in treating youth substance use disorder to share best practices, answer questions and dispel treatment myths with other clinicians, with the hope that others will incorporate the information into their practices.

“Peer-based interventions are typically on the patient side; we hardly ever see them on the clinician side,” Green said. “We’re trying to capitalize on what information clinicians would like to receive and who they would like to receive it from.”

[Original article]