Think Kids and the West Virginia Prevention Research Center (WVPRC) were awarded a two-year grant from the Robert Wood Johnson Foundation (RWJF) in support of a research collaboration to assess how West Virginia compiles and reports health surveillance data in order to build a more inclusive surveillance system.
The project, “When All Are Counted: Closing the Health Surveillance Gap in West Virginia,” is funded under RWJF’s Community Research for Health Equity program managed by AcademyHealth that seeks to elevate community voices and make the priorities of communities the primary goal of local health system transformation efforts.
The project seeks to examine how data are collected and shared, how marginalized groups are adversely affected, and structural solutions for a more representative system. The team will conduct surveys, interviews, and focus groups to study variables for minority populations, disaggregated race, disability categories, and how minority populations are aggregated. The team will also examine how other states use small populations methodologies, and how data are reported and translated into policies and practices.
Unique to the project is a creative communications component. Three writers will join the project to articulate and amplify the prevailing themes expressed during the research process in the public discourse, online, and on social media. Look for the tag line “writing for the When All Are Counted Project” from them as the project progresses.
Project Updates
“The ‘When All Are Counted’ project is studying how health data collection affects three specific populations: the Black, LGBTQ+, and disability populations in West Virginia. The project is part qualitative research and part advocacy, and that’s where you come in.” LEARN MORE about the project from community outreach specialist Amy Jo Hutchison and get plugged into the project.
Many thanks to those of you who joined us for our first round of focus groups. We’re in the process of scheduling the second round and will announce dates/locations soon.
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
Ava Mick– Wheeling
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
Updates
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