A new Johns Hopkins data tool helps people with disabilities determine when they qualify for the COVID-19 vaccine and compares how states prioritize the disability community in vaccine rollout plans. The website, designed and run by researchers, students and advocates with disabilities for people with disabilities, aims not only to help the disability community be informed and ultimately get vaccinated but also to arm policymakers with data to improve the health care system.

The COVID-19 Vaccine Prioritization Dashboard can be accessed here: https://disabilityhealth.jhu.edu/vaccine/.

“There’s been a persistent gap in the pandemic response for the disabled community. It started with testing and we’re seeing it being echoed in the vaccine rollout,” says Bonnielin Swenor, director of the Johns Hopkins Disability Health Research Center and associate professor of ophthalmology at the Johns Hopkins Wilmer Eye Institute at the Johns Hopkins University School of Medicine. “Being part of that community, we understand the need to empower stakeholders and policymakers with data.”

The idea was sparked by Johns Hopkins University senior Sabrina Epstein, who has the genetic connective tissue disorder Ehlers-Danlos Syndrome (EDS), which places her at increased risk for severe illness from COVID-19. Because EDS is considered a rare disease, it is not listed as a high-risk chronic illness for vaccine prioritization, making it difficult for Epstein to determine when she can get vaccinated.

“I was trying to register my grandfather for his vaccine in Texas and I noticed that I already qualified in Texas because of my chronic conditions, but in Maryland, I don’t qualify yet. I’m still waiting,” says Epstein, who is majoring in public health studies. “I realized from my own example that it’s happening to lots of people and there’s so much confusion. We want people to be able to use this tool to identify if they or their family or friends qualify for a vaccine in their state and to advance advocacy efforts.”

The university’s Disability Health Research Center created the dashboard in collaboration with the Center for Dignity in Healthcare for People with Disabilities.

The tool will be updated weekly.