Data Dashboard Informs Disabled Populations About Vaccine Rollout

February 23, 2021 - A team from Johns Hopkins has created a data dashboard that shows how states are prioritizing people with disabilities in the COVID-19 vaccine rollout.

The tool can also help people with disabilities determine when they’re eligible for shots, and provide policymakers with data to improve the system.

Created by researchers, students, and advocates who themselves are disabled, the COVID-19 Vaccine Prioritization Dashboard launched to help people with disabilities get vaccinated and access critical information.

“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,” said Bonnielin Swenor, director of the Johns Hopkins Disability Health Research Center. “Being part of that community, we understand that need and want to empower the stakeholders and policymakers with data.”

The university’s Disability Health Research Center created the dashboard in collaboration with the Center for Dignity in Healthcare for People with Disabilities. The idea for the dashboard came from Johns Hopkins senior Sabrina Epstein, who has a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS) that puts her at increased risk for severe illness from COVID-19.

EDS is considered a rare disease, so it is not listed as a high-risk chronic condition for vaccine prioritization, making it difficult for Epstein to know when she could 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,” said 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 team will update the tool weekly. Researchers noted that accessibility of information has also been a barrier to vaccines for people with disabilities, so they developed the dashboard with accessibility in mind. State websites often rely on charts and tables that can be difficult or impossible for people with visual impairments and other disabilities to decipher.

“The prioritization schemes aim to reduce infection and mortality but access and accessibility has to also be part of that equation,” Swenor said.

“There are certain members of the disability community that as of this moment don’t have access to the information or can’t get to the vaccination sites. The path forward has to include accessibility, or we’re never going to reach equity in the pandemic response, as over a quarter of the population has a disability.” 

Other organizations have designed dashboards to inform the public about the vaccine rollout. The University of Alabama at Birmingham (UAB) and PathCheck Foundation recently developed a real-time, interactive data dashboard to track the quantity of COVID-19 vaccines administered in the US and around the world.

“As we shift from focusing on the spread of COVID-19 to balancing the return of our lives to normal, vaccinations are one of the key components. The vaccination dashboard provides information to everyone, regardless of who you are or where you live,” said Sue Feldman, PhD, professor and director of graduate programs in health informatics in UAB’s School of Health Professions.

“With so much data and information to process, we partnered with PathCheck Foundation to develop a one-stop-shop where people could visualize the content in an easy-to-understand manner. We are excited about our partnership with the PathCheck Foundation to make this happen.”