The COVID-19 pandemic added to the decades of evidence that public health institutions are routinely stretched beyond their capacity, particularly in rural areas [1]. Local and state-level health department resource deficiencies reduce their ability to address health disparities [2]. While the pandemic affected nearly everyone, communities of color, those residing in rural and frontier counties particularly around meatpacking plants, and other vulnerable populations disproportionately experienced COVID-19-related morbidity and mortality in addition to negative economic consequences [3–8]. Community health workers (CHWs) are touted as a cost-effective intervention for achieving health equity [9]. They have the ability to establish trust with individuals and families adversely impacted by the social determinants of health (SDoH), sometimes called social risk factors, and effectively connect them to partner organizations that can address their needs.
The Communities Organizing to Promote Equity (COPE) project is an initiative to address health disparities in 20 counties across Kansas, in part, through the deployment of CHWs. This program also includes Local Health Equity Action Teams (LHEATs), which are community coalitions comprised of community residents, organizational leaders, and a cadre of CHWs hired for this project [10]. The goal of the COPE project is to mobilize communities to work together and prioritize local health equity issues, develop feasible strategies to address health equity barriers related to SDoH, collaborate with organizations in the community to strengthen access to services, and elevate the community's voice in public health planning. One of the primary roles of COPE CHWs is developing partnerships with organizations in their respective counties. These partnerships enable CHWs to connect individuals and families with existing resources and services to address their needs. CHWs build community and individual capacity. They identify individuals who need assistance through community events, self-referrals, or referrals from organizations/clinics and actively work with these individuals to develop tailored plans to address their needs. CHWs are active members of their county's LHEAT and provide insights from clients' experiences to support the implementation of LHEAT-driven strategies and community-based events.
To document the project’s wide range of both community-based and client-based efforts, we reviewed seven existing data tracking systems that accommodate CHW workflows, including electronic medical record systems and available community-based documentation systems. Some of the limitations of existing systems identified included (1) an exclusive focus on medical needs without documenting social risk factors like employment or housing status, (2) community-based platforms that focus on implementing a referral system but fail to track client goals and progress, (3) systems that lack a structure for progress evaluation and reporting, and (4) limitations on customization for specific project needs (e.g., could not accommodate tracking of partnerships and events). In these existing systems, CHWs are often required to document in multiple platforms, resulting in fragmented data and increased redundancy, errors, and inefficiency.
Accurate documentation of CHWs' influence on the community, public health, and healthcare processes is vital, particularly as states like Kansas consider Medicaid reimbursement models for CHWs [11]. We could not identify an existing platform, system, or database that efficiently captured specific information about partners at community organizations/facilities, events/ activities, client demographics and outcomes, and longitudinal assessment of care plans [11]. Thus, we developed a data collection system capable of recording such information through a user-friendly interface with rigorous security measures for storing clients’ protected health information (PHI). To our knowledge, this is one of the first systems covering the full scope of CHW activities. This database includes details on partner organizations supporting medical and social needs, community outreach events, information about client encounters, and progress toward client's goals. Further, we can customize workflows to account for unique geographic needs and resources. Finally, this system integrates all program activities into a single platform, simplifying program monitoring and evaluation.
In this paper, we describe the COPE Database development process and outline the platform's features and functionality. The lessons learned through this process and the values of this unique database can support further implementation and similar efforts to develop CHW client management systems.