UIC researchers awarded $4.5 million grant for community-engaged disability research

Researchers from the University of Illinois Chicago have been awarded a five-year, $4.5 million grant from the National Institutes of Health’s National Center for Medical Rehabilitation Research. The grant will fund the ENGAGED: Disability Community Engaged Medical Rehabilitation Research Resource Center, a hub for community-engaged training, outreach and investigation into the social, economic, environmental and policy factors that affect the health of people with disabilities.

“We will be conducting our own independent research as part of the grant, but we will also be creating a variety of resources and initiatives to support other medical rehab researchers who are interested in integrating community-engaged research practices into their work,” said Susan Magasi, co-principal investigator on the project with Joy Hammel, a fellow professor in the occupational therapy department in the College of Applied Health Sciences. “We know that the vast majority of researchers are not trained in how to do substantive, equitable community-engaged research practices that really involve people with lived experiences.”

Community-engaged research involves participation from community stakeholders, integrating their needs and direct involvement throughout the research process. The approach gains valuable buy-in from the relevant community from the outset and has been shown to have more successful outcomes.

“If you’re focusing on the community priorities from the front and throughout the process, not just after you’ve completed it, they’re much more likely to use it,” said Hammel. “Interventions and policies that are developed are more effective.”

NIH funds a nationwide system of Medical Rehabilitation Research Resource (MR3) Centers designed to build and strengthen infrastructure to conduct rigorous, timely medical rehabilitation research. The ENGAGED MR3 Center, which stands for Establish, Network, Generate, Advance, Generate and curate, Empower, and Disseminate, will be one of six centers in the nationwide network. 

Research activities in the center will have a broad disability focus, including people with physical disabilities, cognitive disabilities, mental health disabilities, sensory disabilities and chronic health conditions. The work will probe how social determinants of health impact people with disabilities, filling an important research gap, according to Hammel.

“As far as we know, there hasn’t been a medical rehabilitation research center that focuses specifically on the lived experience of people living with long-term disabilities,” Hammel said.

The center will also offer mentorship and technical assistance trainings to build capacity both within academia and for community members serving as co-investigators in research.

“It’s not enough to just invite people with disabilities to participate in research,” Magasi said. “We want to help people build their skills and confidence to fully engage as co-researchers and collaborators.”

The center’s leadership team includes scientists and collaborators who identify as people with disabilities as well as family members of people with disabilities. The grant will also support pilot funding for new community-engaged research initiatives through a national competition.

The UIC Department of Occupational Therapy within the College of Applied Health Sciences has developed a Scholarship of Practice model that has long sought to strengthen the relationship between research, clinical practice and communities. This approach is informed and strengthened by deep connections with the college’s lauded interdisciplinary disability studies PhD program, the researchers said.

“This is what we specialize in. This is what we do,” Hammel said. “Many of us identify as disabled researchers as well as disability activists, and we have incredibly strong relationships with the disability rights communities and many disability organizations and communities in Chicago, but also nationally.”

While Magasi and Hammel are based in the UIC Department of Occupational Therapy, they have intentionally built the ENGAGED MR3 Center as an initiative spanning not only disciplinary silos but the divide between research, rehabilitation services and the 70 million people with disabilities living in the United States, they said.

“We’re not just a university in Chicago, but we’re a university for Chicago. So that commitment to community really distinguishes us as a university,” Magasi said. “We’re excited to take that vision nationally and to be able to serve as a as a hub and a resource for how to really do community engagement with disability and other minoritized communities at a rigorous, intentional and equitable level.”

Community-based disability rights organizations and researchers from the University of Texas Health, Houston are collaborating with Magasi, Hammel, Yolanda Suarez-Balcazar, Tanvi Bhatt, Sarah Parker Harris, Beth Marks, Dr. Andy Boyd, Robert Motl and Ed Wang from the College of Applied Health Sciences. Karen Cielo from the Center for Clinical and Translational Science and Jeni Hebert-Beirne from the School of Public Health are also collaborators on the project.