Golisano Institute for Developmental Disability Nursing Partners on NIH Grant to Address Ableism in Health Care

PITTSFORD, N.Y., Nov. 25, 2024 /PRNewswire/ -- 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.

About St. John Fisher University
St. John Fisher University is a comprehensive liberal arts institution that provides a transformative education to approximately 3,800 undergraduate, master's, and doctoral students each year. Across its five Schools, Fisher offers nearly 40 majors in the humanities, social sciences, natural sciences, business, education, and nursing; 11 pre-professional programs; and master's and doctoral programs in business, nursing, education, and pharmacy. Located just beyond Rochester, New York, the University's 160-acre residential campus boasts a robust living and learning community and through online offerings, attracts students from more than 30 states. An independent institution today, the University was founded by the Congregation of St. Basil in 1948. As Fisher moves forward into the future, it stays true to its Catholic heritage and honors the Basilians by embracing their motto, "Teach Me Goodness, Discipline, and Knowledge."

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 content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

About Tom Golisano and the Golisano Foundation
Tom Golisano—entrepreneur, philanthropist, and civic leader—is the founder of Paychex, Inc., the nation's largest human resource company for small to medium-sized businesses, providing integrated human capital management solutions for payroll, benefits, human resources, and insurance services for more than 745,000 clients in the U.S. and Europe. Mr. Golisano's vision, perseverance, and action have left an indelible mark on a broad spectrum of issues that touch our lives—in business, healthcare, education, voter policies, politics, and tax reform. His continuing investments are helping to advance entrepreneurship through the 2023 establishment of the Golisano Institute for Business & Entrepreneurship as well as driving the success of numerous businesses and start-ups. His personal philanthropic contributions to hospitals—including three children's hospitals that bear his name—and numerous educational institutions, his Foundation, and other organizations now exceed $860 million. He has dedicated more than $145 million to advancing inclusive health around the world, helping to close the substantial gap in access to care for people with intellectual disabilities. 

A fierce advocate for dignity and inclusion, in 1985 Mr. Golisano applied his pioneering spirit to establish the Golisano Foundation to make the world a better place for people with intellectual and developmental disabilities. With more than $120 million now in gross assets, it is one of the largest private foundations in the U.S. devoted to supporting programs for people with intellectual and developmental disabilities awarding about $5 million annually to non-profit organizations in Western New York and Southwest Florida.  

NIH Grant Support Acknowledgement
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.

SOURCE St. John Fisher University