Communication Service for the Deaf, Inc. (CSD) has been granted $250,000 through the Eugene Washington PCORI Engagement Award Program, a Patient-Centered Outcomes Research Institute (PCORI) initiative. This funding will support a two-year project titled "Building Capacity for Deaf American Sign Language Users in Virtual Healthcare PCOR/CER," scheduled to run from November 1, 2024, to October 31, 2026.
With the advent of the COVID-19 pandemic, telemedicine has become a critical component of healthcare delivery. However, Deaf individuals who use American Sign Language (ASL) face significant communication and health literacy barriers, making virtual healthcare services potentially inaccessible and inequitable. This project aims to address these challenges by improving the inclusiveness and efficiency of virtual healthcare platforms for the Deaf community.
CSD’s health and patient advocacy division, DeafHealth, will form a national Deaf Patient Coalition comprising a diverse group of stakeholders. This coalition will capture and analyze Deaf patient experiences with virtual healthcare platforms to guide future patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) focused on these platforms. Collaboration with academic institutions, researchers, and patient communities is expected to drive advancements in equitable care and decision-making for Deaf patients, aligning healthcare services with patient-centric outcomes and preferences.
The project will be led by Allysa Dittmar, MHS, Vice President of DeafHealth. The Rochester Institute of Technology (RIT), under the leadership of Dr. Tiffany Panko, Executive Director of the Deaf Health Care & Biomedical Science Hub and Director of the Deaf Health Laboratory at RIT’s National Technical Institute for the Deaf, will support the initiative.
“Deaf people comprise approximately 13% or 30 million of the American population, yet they are often overlooked in research. We are grateful to PCORI for this opportunity to promote equitable participation and engagement for both Deaf patients and researchers alike," said Dittmar. "The lack of opportunities for our community has hindered the ability to identify effective interventions to improve the health and wellbeing of Deaf people who use ASL. As healthcare increasingly shifts to virtual platforms for care and treatment, it is crucial to include the Deaf population, researchers, and stakeholders to ensure that future PCOR/CER research is patient-centered and equitable.”
By incorporating diverse Deaf patient experiences, this project aims to empower this historically marginalized community with the resources and PCOR/CER knowledge necessary to drive community-centered change for improved health outcomes. This aligns with PCORI’s mission to empower patients and others with the information they need to make better-informed health decisions. In the long term, the project aims to propose future PCOR/CER studies that reflect the priorities identified by the Deaf community regarding virtual healthcare platforms.
PCORI is an independent, nonprofit organization authorized by Congress to fund patient-centered comparative clinical effectiveness research. This research provides patients, caregivers, and clinicians with evidence-based information needed for better-informed health and healthcare decisions.
For more information on the PCORI Engagement Award and CSD's funded project, visit PCORI's official website. Projects approved for funding by PCORI’s Engagement Award Program were selected through a rigorous and highly competitive review process, assessing their ability to meet PCORI's engagement goals and objectives, as well as program criteria.
