West Virginia needs a more inclusive health data surveillance system.
In a state like West Virginia, most of the health-related data that is collected and shared are focused on the majority population—specifically, on white people. Marginalized populations have historically been described as “statistically insignificant,” and data affecting their specific healthcare needs is often not collected, shared, or used to improve the way we report information or improve systems to keep everyone healthy.
How our state collects and reports health data and how they use that data affects our health, for better or worse.
The “When All Are Counted” project studies how this “majority rule” type of health data collection affects three specific populations in West Virginia: the Black, LGBTQ+, and disability populations. The project is funded under the 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 “writing for the When All Are Counted Project” tagline 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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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
Ellie Heffernan a freelance writer drawn to investigating powerful people and the communities they often harm. Her work in newsrooms has taken her from Maryland to North Carolina to West Virginia, covering topics like city and state government, racial equity, education and disability rights. She has written for INDY Week, The Local Reporter, The Daily Record and, most recently, Mountain State Spotlight. Ellie tweets @elliepheffernan.
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
The West Virginia Press Association (WVPA) serves as the voice of the state’s newspapers, supporting the industry with legislative, legal and training programs, among other initiatives. WVPA offers a number of ways for newspaper publishers, editors, reporters and advertising personnel to increase their knowledge bases and improve their skills. They have a full-time staff, 9-member board and fellow newspapers offer educational programs, technical support and legal advice throughout the year. Read Autumn Shelton’s first piece, ‘When All Are Counted’ organizers hoping WV residents will help with data collection.
Selected Writings by the Communications Team
Highmark West Virginia receives perfect score on national report for workplace equality– Autumn Sheldon, West Virginia Press Association- December 28, 2023
In West Virginia, the Beckley VA Medical Center is working to ensure an inclusive environment for LGBTQ+ veteran– Autumn Sheldon, West Virginia Press Association- November 10, 2023
Blog post: No data, no care: Healthcare for people with disabilities in WV’s prisons– Ellie Heffernan- October 27, 2023
Blog post: Silent Suffering Unveiled: The Sissonville Neglect Case and the Systemic Oversights in Child Protection– Crystal Good- October 11, 2023
WV DHHR extends deadline for survey on West Virginians’ health and well-being– Autumn Sheldon, West Virginia Press Association- October 13, 2023
When All Are Counted: Members of West Virginia LGBTQIA+ community struggle to find healthcare providers– Autumn Sheldon, West Virginia Press Association- September 14, 2023
Blog post: COVID is still here, and some are still dealing with its effects– Erin Beck- August 23, 2023
Blog post: The Overlooked Crisis: Black Overdoses in West Virginia- Crystal Good- August 22, 2023
Blog post: From a Mother’s Heart: Navigating Racial and Transgender Disparities in West Virginia- August 22, 2023
Blog post: Hundreds of West Virginians wait for help to keep them out of institutions– August 8, 2023
West Virginia residents finding new HIV drugs such as CABENUVA are expensive and difficult to obtain– Autumn Shelton, West Virginia Press Association- July 31, 2023
Blog post: Unseen, Unheard: The Struggle To Find Black Children in West Virginia’s Data– July 25, 2023
‘When All Are Counted’ organizers hoping WV residents will help with data collection– Autumn Shelton, West Virginia Press Association- June 16, 2023
Blog post: Instead of community connection, those with disabilities often face poverty and isolation– May 25, 2023
Blog post: West Virginia lacks LGBTQI+-specific substance use treatment– May 19, 2023
Blog post: Birthing Justice: My Journey to Becoming a Doula and the Importance of Black Doulas in West Virginia– April 5, 2023
Blog post: The Burden of Racism in Healthcare: Confronting Hypocrisy in Progressive Nonprofits– February 21, 2023
Blog post: While they face more hurdles in health care, nonbinary people can endure. – February 8, 2023
Blog post: Same story, same game– December 31, 2022
Blog post: How welcome is West Virginia? Autism and the search for support. December 27, 2022
Blog post: Legislative meetings lack focus on all kids– November 22, 2022
Blog post: Advocates, lawmakers accuse DHHR of withholding abuse records November 14, 2022
Blog post: The significant insignificance of Black maternal health in WV– November 12, 2022
Blog post: “Like any other kid.” Representation matters in health care.– October 5, 2022
Blog post: What the data is and isn’t telling us – September 2, 2022
Blog post: Everyone counts. Everyone should be counted. – April 23, 2022