Golisano Institute for Developmental Disability Nursing Partners on NIH Grant to Address Ableism in Health Care
The Golisano Institute for Developmental Disability Nursing at St. John Fisher University, in partnership with the RUSH University College of Nursing and University of Minnesota Institute on Community Integration, was awarded a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (NIH). This is the University’s first grant from the NIH.
This NIH program, Understanding and Mitigating Health Disparities experienced by People with Disabilities caused by Ableism, specifically supports studies that seek to understand how ableism—discrimination and social prejudice against people with disabilities—contributes to health disparities. The investigators from the three institutions are working collaboratively on the research program, End Diagnostic Overshadowing: Addressing Ableism in Diagnoses, which aims to identify and understand the mechanisms underlying diagnostic overshadowing and to develop methods to reduce it. They were one of 10 programs funded by the NIH.
According to the Joint Commission, diagnostic overshadowing stems from health care providers’ cognitive bias, where they may incorrectly attribute symptoms to a patient’s disability rather than to a potentially new or comorbid condition, leading to diagnostic errors. Following recommendations from the Joint Commission, the research study will seek to understand the mechanisms underlying diagnostic overshadowing and then develop targeted educational programs to change behaviors and mitigate instances of overshadowing.
“We know that diagnostic overshadowing is a direct result of ableism, and can have devastating consequences for patients, including increased pain, intensified mental health issues, or prolonged hospital stays, among others,” said Dr. Holly Brown, executive director of the Golisano Institute. “We are proud to be one of the investigators collaborating to understand how to decrease diagnostic errors that stem from implicit bias.”
RUSH University Medical Center and Fisher’s Golisano Institute will partner with identified health systems to conduct data searches, evaluate use of Current Procedural Technology (CPT) billing codes related to diagnoses among people with disabilities, conduct chart reviews and staff interviews to, in partnership with the University of Minnesota Institute on Community Integration, identify themes that may underly diagnostic overshadowing for patients across the lifespan with disabilities, including IDD. The Golisano Institute will partner with Erie County Medical Center and Rochester Regional Health in this research; Dr. Dianne Cooney Miner, senior advisor at the Institute, will lead the collaboration effort.
“Our clinical partners are committed to delivering the highest quality care and improve health equity for this population. This research will create a data-informed insight into how ableism can lead to mis-diagnosis and provide health care teams with educational resources to identify and overcome the impact of diagnostic overshadowing,” Brown explained.
Dr. Sarah Ailey, a professor in the Department of Community, Systems, and Mental Health Nursing at RUSH University, who serves as the principal investigator on the grant, said using the Collective Impact Model is an innovative approach to the research.
“The Collective Impact model provides a useful framework for addressing the changes needed for improvement in diagnostic errors among people with disabilities with the input from multiple affected parties; people with disabilities themselves, health care professionals, health systems, payors, policy makers, and others,” said Ailey.
To learn more about the Golisano Institute for Developmental Disability Nursing, visit go.sjf.edu/golisanoinstitute.
The research reported in this press release is supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health under award number 1R01HD116320-01. The total amount awarded to the Golisano Institute through RUSH University is $998,464 over the next five years. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.