Boston University has been approved for a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). Led by Dr. Emily Rothman, Professor and Chair of the Department of Occupational Therapy at BU's Sargent College, this groundbreaking project is aimed at improving colonoscopy access, participation and patient experience for autistic adults and involves collaboration with physicians, public health experts, and autistic self-advocates from across the United States.
Autistic adults face a disproportionately high burden of gastrointestinal (GI) conditions-including inflammatory bowel disease and Crohn's disease-yet they are significantly less likely than non-autistic adults to receive colonoscopies, a critical diagnostic and preventive procedure. This project will engage the voices of autistic adults through the development of a national advisory board of autistic adults with colonoscopy experience that will engage in the development of a patient-centered comparative clinical effectiveness research (CER) agenda.
Many autistic people face sensory, communication, and anxiety-related challenges when it comes to procedures like colonoscopy. This project is about ensuring their voices shape the future of GI health care research and practice."
Dr. Emily Rothman, Professor and Chair of the Department of Occupational Therapy,BU's Sargent College
The project will use community-based participatory research methods to (1) train autistic adults in the fundamentals of patient-centered research; (2) conduct focus groups with autistic adults, GI physicians, and caregivers to understand barriers to colonoscopy for autistic people; and (3) co-create a research agenda that identifies the most urgent and actionable research questions related to improving colonoscopy experiences for autistic adults in the United States.
Ultimately, the project aims to lay the foundation for large-scale CER that improves 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 with personal experience navigating annual colonoscopies due to Lynch syndrome who is pursuing a master's degree in public health from Boston University.
The project titled "Building capacity among autistic adults for patient-centered CER focused on colonoscopy" is part of a portfolio of projects funded by PCORI to help develop a community of patients, caregivers, clinicians and other stakeholders who are better equipped to engage as partners in all phases of patient-centered CER and to disseminate results of PCORI-funded studies. Through its Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations who can leverage their lived experience and expertise to influence research to be more patient-centered, relevant and useful.
This project strengthens BU's long-standing commitment to health and community-engaged research. It builds on Dr. Rothman's track record of initiatives that have advanced autistic health. Boston Medical Center and the national nonprofit AANE (Association for Autism and Neurodiversity) are key partners on the grant and will assist with dissemination of the research agenda to clinicians, researchers, and policy leaders.
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