In July of this year, Common Ground Health launched the My Health Story 2022 Survey to provide an important way for residents in our region to share information about their health and the life circumstances that impact their well-being. The survey focuses on under-resourced communities and individuals whose stories are often left out of public health initiatives like these. The survey will deepen understanding of the dynamics that drive health equity and reveal where program and policy changes could make our communities healthier.
This year, Common Ground Health is partnering with Empire Justice Center and the Monroe County Language Access Coalition to strengthen inclusion of community members who have limited English language communication and reading skills.
Thanks to new technology and a team of dedicated professionals who are making accessibility a top priority, My Health Story 2022 aims to reach a significantly more diverse population. Typically, online surveys are only offered in written form and perhaps in two languages. In addition to the English and Spanish versions of My Health Story 2022, respondents who prefer to listen to the survey can use a text-to-speech format in both languages, which is ideal for individuals with lower reading levels or a visual impairment.
Common Ground Health has also added an American Sign Language (ASL) version featuring certified Deaf interpreters sharing each question and answer in ASL. This ASL access was pioneered by a collaboration among the National Center for Deaf Health Research at the University of Rochester and a team at Vanderbilt University that built the survey platform Research Electronic Data Capture (REDCap). REDCap researchers created a platform add-on that made it easier to embed individual sign language videos. My Health Story 2022 is one of the first efforts in our region to use this ASL-accessibility module in a broad public health surveillance project.
“We are creating a bridge from the Deaf community to the hearing world,” said Dr. Lorne Farovitch, who studied at the University of Rochester and Rochester Institute of Technology and is now an HIV Epidemiologist at the New York City Department of Health and Mental Hygiene. Dr. Farovitch served as a research consultant on My Health Story 2022 and was intimately involved in making the survey more accessible. “It’s so important that Common Ground Health included Deaf people such as me in the process. We need more organizations to adopt this approach. This is what equality looks like.”
The REDCap platform also allows respondents to increase the font size of the online survey, making it more accessible to those who are visually impaired. “We’re thrilled to offer greater accessibility to My Health Story 2022,” said Common Ground Health director of research Holly Sienkiewicz. “Typically, surveys aren’t accessible to the entire population. This can result in the continued marginalization of groups that are already under-represented. We are committed to breaking down communications barriers so everyone’s voice can be heard."
The Deaf community, represented by members of the Deaf Monroe County Language Access Coalition, was heavily engaged in the process of prioritizing language accessibility for My Health Story 2022. The Monroe County Language Access Coalition, a group of stakeholders convened by the Empire Justice Center, played a vital role in strategizing how to accommodate individuals who have limited ability to read, speak, write, or understand English.
The emphasis on making the survey as accessible as possible was informed in part by lessons learned during the COVID-19 pandemic. “During the pandemic we saw citizens who are Deaf, hard of hearing, or have limited English proficiency excluded from important information about COVID’s spread, testing, treatment and vaccines,” said Marlene Cortés, senior program manager of the Language Justice Program at Empire Justice Center. “If key health information is not provided in your primary language, the results can be life threatening.”
Groundbreaking Work for the Future
Cortés said the collaboration and new technology lays the foundation for new language accessibility efforts across the region and beyond. “In the near future, we plan to translate the survey into Arabic,” Cortés said. “We’re also looking to partner with local Nepali and Karen communities, and the agencies that serve them. We’d like to connect with as many communities as possible in the region. The survey’s language accessibility features are attracting national attention, too. Many language access advocates and other industries are interested in our work.”
The Power of Data
Information collected through the survey is critical to decision-making at the state and local level. The data can also be used to help the community heal and learn from COVID-19 and the resulting economic crises.
“We urge everyone to take the survey – especially in this critical moment as we emerge from COVID-19,” concluded Common Ground Health CEO Wade Norwood. “Residents who share their health stories will help reveal where policy and program changes could make our communities healthier.”
The survey team is employing a diverse group of ambassadors to help all residents of Chemung, Genesee, Livingston, Monroe, Ontario, Orleans, Schuyler, Seneca, Steuben, Wayne, Wyoming and Yates counties take the survey. Participants can complete it anonymously. It is available in English at MyHealthStory2022.org, and in Spanish at MiHistoriadeSalud2022.org. The ASL version of the survey is at MyHealthStory2022ASL.org.
About Common Ground Health
Founded in 1974, Common Ground Health is the health research and planning organization for the nine-county Rochester-Finger Lakes region. We bring together leaders from health care, education, business, government and other sectors to find common ground on health challenges. Learn more at www.commongroundhealth.org.
About Empire Justice Center
Empire Justice Center is a statewide, nonprofit law firm that seeks to make the law work for all New Yorkers, especially for those who need its protection the most. For more than 40 years, Empire Justice staff has protected and strengthened the legal rights of people in New York who are poor, disabled or disenfranchised through three major areas of service: teaching the law by providing training, support and technical assistance to legal services and private attorneys and other community-based advocates to help them better serve their clients; practicing the law by providing direct civil legal assistance and undertaking impact litigation; and changing the law by engaging in policy analysis, research and advocacy.