Program would create statewide healthcare data for Black, Disability and LGBTQIA+ populations
By Autumn Shelton, West Virginia Press Association and “When All Are Counted” Project
CHARLESTON, W.Va. – A West Virginia advocacy group is looking to transform healthcare for marginalized populations living in the Mountain State, but before a change this big can take place, a lot of help is needed.
Those behind the “When All Are Counted” project, directed by the Charleston-based nonprofit advocacy group Think Kids and funded by a grant from the Robert Wood Johnson Foundation, have two goals—to advocate for those who have historically been considered “statistically insignificant,” especially in the Black, Disability and LGBTQIA+ populations, and to create a statewide healthcare data surveillance system that includes everyone, not just those in the majority white population.
According to Think Kids Executive Director Kelli Caseman, the success of this project is largely dependent upon the number of people who choose to participate.
“We want to build a critical mass of advocates who will help push positive change forward,” Caseman said. “We want our state to invest in building and resourcing a system that doesn’t just report data but shares the data in a way that’s meaningful to communities. At the end of the project, we’ll hold a large convening in the state’s capital and foster a dialogue between project stakeholders and state officials to find common ground and take next steps.”
Caseman explained that there are multiple factors behind why marginalized populations have been considered “statistically insignificant,” but from a research standpoint it means that the healthcare related data gathered from these populations is often not enough to determine conclusive results, or to even be counted at all.
“Statistical significance usually refers to a claim that observed data are not the result of chance, but rather attributed to a specific cause. That’s the nature of research,” Caseman noted. “Statistical insignificance means that the data aren’t large enough to provide that proof or meaning. Now, when the data are perceived as ‘larger numbers yield better results,’ the desire to collect specific data on smaller populations is disincentivized.”
Based on the most recent information from the U.S. Census Bureau, the state’s total population is 93.1% white. This means that the majority of healthcare data in West Virginia is collected from the white population.
However, when healthcare data is only collected and analyzed from the majority, those who are not in the majority may not be receiving healthcare that meets their needs.
“Different populations of West Virginians, like people of color, people with disabilities, etc., experience specific health disparities that our healthcare system should address, and we should acknowledge and ameliorate. For example, Black women are three times as likely to die from pregnancy-related causes as white women. LGB adults are more likely to have cancer than heterosexual adults. In 2002, only 40% of children and adults with disabilities visited a dentist compared with 45% of children and adults without disabilities. These populations have specific health care needs, and they utilize systems that don’t acknowledge these needs. We believe better data collection and better use of data wouldn’t just improve the health of West Virginians and the healthcare system, but also improve trust and communication between systems and individuals from marginalized populations.”
Amy Jo Hutchison, the project’s community outreach specialist, explained this further in a video, which can be found on the “When All Are Counted” website.
For marginalized populations “data affecting their certain healthcare needs is often not collected, is often not shared, or is not used to improve the way that information is reported or to improve the systems to keep everyone healthy,” Hutchison said. “Think, for example, about the water crisis in primarily black communities in Flint, Michigan. Residents complained about a strange taste in the water for almost 18 months before a physician finally found elevated [lead] blood levels in the children there. Or, we can think about the discrimination and the homophobia that fueled the HIV epidemic in the ‘80s. For several years after the CDC realized this virus was spreading in our communities across the country, the American government did very little to even address the epidemic.”
Additionally, Hutchison stated that although West Virginia has the highest disability population in the nation, many buildings are not ADA compliant.
To make a change, and ensure that all are counted, residents throughout West Virginia are encouraged to participate and provide insight for this project.
To get started, those who wish to help may visit the “When All Are Counted” project website to register for updates, read informative articles written by the communications team, and discover upcoming dates for in-person and virtual focus groups.
Caseman noted that discussions during the focus group meetings will be centered around gathering a sense of identity “as West Virginians, as members of marginalized communities–and how that can adversely affect our health and our perceptions of the health care system.”
“We wonder how much people know about the health of those in their communities, and where that information comes from– word of mouth or reported by our state health surveillance systems,” Caseman continued. “Does this lack of data contribute to a distrust of the data our state shares? And could this distrust translate into a lack of utilization of health care?”
“Individuals from the Black, LGBTQIA+, and Disability communities will receive $50 for their time and input. A free project convening will be coming in March 2024. We’d love for individuals to join us for it,” Caseman stated.
Qualitative research for the project is being overseen by the West Virginia Prevention Research Center (WVPRC).
“The WVPRC is one of 26 PRCs across the United States funded and supported by the CDC (Centers for Disease Control and Prevention),” Caseman explained. “Each PRC maintains a research center and conducts prevention research that promotes health and prevents chronic illness and other diseases and disabilities. And so, they really “get” the point of the project. They’re keenly aware of missing data and the potential of using it to raise public awareness and strategize on how to improve community health.”
Those who participate in the project may remain anonymous, although the information shared will be used to “build a health data surveillance system in West Virginia that serves all of us.”