Autistic adults face a disproportionately high rate of gastrointestinal (GI) conditions—including inflammatory bowel disease and Crohn’s disease—but are significantly less likely than non-autistic adults to undergo colonoscopies, a crucial diagnostic and preventive procedure.
This project seeks to address that gap by incorporating the perspectives of autistic adults through a national advisory board composed of individuals with colonoscopy experience. The board will guide the creation of a patient-centered comparative clinical effectiveness research (CER) agenda.
The project will employ community-based participatory research methods, including:
Training autistic adults in the fundamentals of patient-centered research.
Conducting focus groups with autistic adults, GI physicians, and caregivers to identify barriers to colonoscopy.
Co-creating a research agenda that prioritizes urgent and actionable questions to improve colonoscopy experiences for autistic adults in the U.S.
The long-term goal is to establish a foundation for large-scale CER that enhances health outcomes for autistic patients.
Dr. Rothman’s Core Leadership Team includes Dr. Adam Stein, a GI specialist at Northwestern Medicine; Dr. Steven Lord, an internal medicine physician at Mt. Auburn Hospital in Cambridge, MA; and Scarlett Shiloh, an autistic patient advocate navigating annual colonoscopies due to Lynch syndrome, who is also pursuing a master’s degree in public health at BU.
Titled “Building Capacity Among Autistic Adults for Patient-Centered CER Focused on Colonoscopy,” this project is part of PCORI’s broader effort to foster a network of patients, caregivers, clinicians, and stakeholders who can actively contribute to patient-centered research and disseminate results to improve clinical practices.
The initiative reinforces BU’s long-standing commitment to health and community-engaged research and builds on Dr. Rothman’s previous work advancing autistic health. Boston Medical Center and the national nonprofit Association for Autism and Neurodiversity (AANE) are key partners, supporting the dissemination of the research agenda to clinicians, researchers, and policymakers.
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