The Interface Between Communities and the Primary Care System in Rural and Low-income West Virginia: Historical and County-level Experience to Inform the Future of Community Health Workers (CHWs)

West Virginia (WV) has been working to strengthen the interface between its communities and the primary care system for many decades. The uncertain future of the Affordable Care Act (ACA) and recent evidence of continued lags and declines in health outcomes and state and federal healthcare budgets have added to the urgency for further changes to primary care system functioning and community engagement. A dialogue about how to address these challenges is underway among a number of stakeholders in WV, which includes potential uses and strategies for Community Health Workers (CHWs). This dissertation included a historical analysis to provide state-wide context of the community and primary care system interface since the New Deal Era in WV, and two county-level case studies to explore the nature of that interface at the local level. The historical analysis entailed archival document review and 12 oral histories, which were analyzed and organized into an historical argument synthesizing WV’s experience. The county case study sites were selected to represent different contexts as well as population health status across the state. These cases provided frontline perspectives from the primary care workforce and communities. Methods for the county cases included document review and 35 in-depth interviews. The interviews were transcribed and coded, and two cases were developed using a framework analysis approach. Historically, the state of WV has extensive experience with encouraging, supporting, or requiring community and primary care system interaction. This experience has been fragmented and inaccessible to current stakeholders, however, and has not led to a coherent strategy or program. Stakeholders and decision-makers can learn from historical experience about how communities have engaged with primary care in order to develop such a program; the county case studies will reinforce and spotlight such learning opportunities. Mingo County, the first of the two county cases, has a short history of bringing multiple local partners together to create a shared vision for a healthier future. These partners are implementing an integrated set of initiatives, including a CHW cadre, to engage and support the community while providing services that reflect local priorities and values. In Pendleton County, several decades of experience with engaging the community to provide input and feedback to the primary care system has resulted in high quality clinical services and enduring relationships among local individuals and agencies. This county does not have a shared vision for the future of primary care or CHWs, with many local agencies working independently. This study identified a number of recommendations for the future of CHW work in WV and beyond: 1) Develop local visions and strategies for CHWs and share these with other counties and state-level leadership in WV to help inform local and state plans and identify necessary resources. 2) Ensure that communities and the primary care system seek out, value, and support those individuals performing CHW tasks. 3) Keep CHW certification processes simple and be inclusive of diverse local models. 4) Invest time and resources in relationships among and between community members and the primary care system at local- and state-level. 5) Draw on community and primary care worker experiences in WV to identify relevant and inclusive metrics for measuring and tracking community engagement. 6) Continue to focus attention and support on primary care and community engagement, particularly when political and financial support is for these efforts is low