West Virginia needs a more inclusive health data surveillance system.

In a state like West Virginia, where most of the population is white, most of the health-related data that are collected and shared are focused on the majority population—on white people. Marginalized populations have historically been described as “statistically insignificant” and data affecting their specific healthcare needs are often not collected, shared, or used to improve the way we report information or improve systems to keep everyone healthy.

The way our state collects and reports health data—and the way they use that data—affects our health, for better or worse.

The “When All Are Counted” project is studying how this “majority rule” type of health data collection affects three specific populations: the Black, LGBTQ+, and disability populations, in West Virginia. The project is funded under Robert Wood Johnson Foundation’s Community Research for Health Equity program, managed by AcademyHealth, and directed by Think Kids. The West Virginia Prevention Research Center (WVPRC) oversees the qualitative research component of the project.

The goal is to create a more inclusive health surveillance system where everyone counts, and everyone is counted. That’s a heavy lift, and we’ll need your help.

Unique to the project is a creative communications component. Look for the tag line “writing for the When All Are Counted Project” on our blog and social media.

Together, we’ll build a health data surveillance system in West Virginia that serves all of us.

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Project Updates

We had a great time at the Schoolhouse Hotel in White Sulpher Springs in March. Thanks to all who joined us for focus groups there. Next up? Maybe Huntington this summer. Plans are underway; we’ll let you know when we have a date and location.

The Advisory Board

The Advisory Board is a group of West Virginians who represent members of the Black, disability, and LGBTQ communities. They are responsible for guiding and advising the grant team through the project.

Allison Bungard– Charleston

Octavia Cordon– Charleston

JaQue Galloway– Wheeling

Viola Hairston– Bluefield

George “Mack” McIntire– White Sulphur Springs

Geralyn Obetz– Glenville

The Grant Team

Kelli Caseman is the Executive Director of Think Kids and Grant Team Leader of the project. She plans, directs, supports, and serves as the liaison between the team and its funders.

Jessica Coffman is a Program Manager for the WV Prevention Research Center in WVU’s School of Public Health. She has been with WVU since 2002. She holds a Bachelor’s degree in History and was awarded the Master of Arts degree from Appalachian State University in Appalachian Studies in 2002. Ms. Coffman has a particular interest focusing on gender and minority studies in the Appalachian Region. She joined the West Virginia Prevention Research Center late in 2019 as the project manager for the Integrated Community Engagement Collaborative with Dr. Alfgeir Kristjansson. She currently works on several projects within the WVPRC helping to coordinate grant evaluation and qualitative research methods activities.

Amy Jo Hutchison is a born and raised West Virginian and began organizing in poor and marginalized communities across the state in 2017, using her lived experience of poverty to connect with people who share the same experience. In 2020, Amy Jo spoke to the U.S. House Committee on Oversight and Reform regarding the poverty level in Washington D.C. Her testimony went viral and has provided the opportunity to discuss poverty on a much broader stage. She is building a movement grounded in West Virginia, Rattle the Windows, with folks impacted by the issues, focused on economic justice. Email Amy Jo.

Dr. Traci Jarrett is a Research Assistant Professor in the WVU School of Public Health Department of Social and Behavioral Sciences and serves as the Research Lead of the project. She is a faculty member within the West Virginia Prevention Research Center and is housed at the University of Kentucky in Lexington, KY.

The Communications Team

Erin Beck is a writer, journalist, and native West Virginian. She grew up in Doddridge and Ritchie counties, then earned a bachelor’s degree in journalism. Her work has appeared in the Charleston Gazette-Mail, Mountain State Spotlight, The Register-Herald, and several other West Virginia publications.

Crystal Good (she/her/hers) is a writer-poet, performer, and publisher whose work seeks to trouble the Appalachian narrative toward inclusion and a more truthful representation. She is the founder and publisher of Black By God THE WEST VIRGINIAN, a print and multimedia publication centering Black voices to address the information gap. Crystal is the author of “Valley Girl” her debut poetry collection and holds the entirely made up (but totally sincere) office of Social Media Senator for the Digital District of West Virginia to encourage digital and political literacy. Crystal tweets @cgoodwoman