key: cord-0841048-w6nv1d2p authors: Stadnick, Nicole A.; Cain, Kelli L.; Oswald, William; Watson, Paul; Ibarra, Marina; Lagoc, Raphael; Ayers, Lawrence O.; Salgin, Linda; Broyles, Shelia L.; Laurent, Louise C.; Pezzoli, Keith; Rabin, Borsika title: Co‐creating a Theory of Change to advance COVID‐19 testing and vaccine uptake in underserved communities date: 2022-03-04 journal: Health Serv Res DOI: 10.1111/1475-6773.13910 sha: bec294a53393952b86ddc5acb34dd43570f8cf20 doc_id: 841048 cord_uid: w6nv1d2p OBJECTIVES: To describe the use of a Theory of Change to meaningfully engage community members from or support underserved communities in two National Institutes of Health‐funded implementation science projects aimed at promoting equitable access to COVID‐19 testing and vaccination for underserved communities. STUDY SETTING: Both projects focused on Latino, Black, and immigrant and refugee communities in South/Central San Diego and/or individuals accessing care at a federally qualified health center near the US/Mexico border during December 2020–April 2021. STUDY DESIGN: By using a participatory action research design, Community Advisory Boards (CABs) were established for each project with 11 and 22 members. CAB members included community organizers, promotores de salud (community health workers), clinic providers and administrators, and public health researchers. The CABs were guided through a seven‐session Theory of Change process, focused on identifying necessary conditions that must exist to eliminate COVID‐19 disparities along with specified actions to create those conditions and a blueprint for assessing the impact of those actions. DATA COLLECTION: Each session lasted 2 h hosted virtually and was augmented by interactive web‐based activities. There was a live interpreter who facilitated the participation of Spanish‐speaking CAB members. A Theory of Change for each project was completed in approximately 4 months. PRINCIPAL FINDINGS: Nine necessary conditions were identified related to (1) accessible and available services; (2) culturally and linguistically competent programming; (3) investment in trusted community and faith leaders; (4) social safety nets to provide ancillary services. Corresponding actions to create these conditions and measures to indicate success in creating these conditions were operationalized by the CAB. CONCLUSIONS: While resource‐intensive, a CAB‐led Theory of Change process yielded a rich opportunity to engage diverse groups that typically are not invited to inform these processes. provide ancillary services. Corresponding actions to create these conditions and measures to indicate success in creating these conditions were operationalized by the CAB. Conclusions: While resource-intensive, a CAB-led Theory of Change process yielded a rich opportunity to engage diverse groups that typically are not invited to inform these processes. What is known on this topic • Meaningful and representative community engagement is essential to equitably and inclusively maximizing impact, scalability, and sustainment of public health interventions. • There are a few examples of how to respectfully incorporate and amplify the lived experience and wisdom of underserved communities when addressing public health emergencies such as the COVID-19 pandemic. • The Theory of Change approach adds value to such efforts by amplifying community voice in the framing and design of research aims, conduct of research, and development of programs beyond enlisting community members as active participants in predefined studies. • We describe a generalizable Theory of Change community engagement method to identify necessary conditions, actions, and measures to reduce disparities in health and access to care associated with COVID-19 testing, clinical trial participation, and vaccination among immigrants, refugees, Latinos, and people of color communities. • Suggested actions highlighted by the CAB were materials translation in multiple languages and native-speaking interpreters, extended hours and mobile clinics for testing and vaccination, low-technology solutions for scheduling, and culturally appropriate target outreach by trusted messengers. • The methods and findings reported in this paper offer solution-oriented, community-driven strategies to address the well-documented inequities in health outcomes and access to care associated with COVID-19 experienced by underserved communities in the United States. The COVID-19 pandemic dramatically illustrated widening health disparities among immigrant, refugee, and Black, Indigenous, People of Color (BIPOC) communities nationally in the United States and within specific geographic regions. 1 These communities were significantly more likely to experience mortality and morbidity from COVID-19 along with lagging testing and vaccination rates compared to White individuals in the United States. 2 Drivers of these disparities were multifactorial, multilevel, and often intersected with cumulative and compounding impacts. 3, 4 For example, racial and ethnic minority communities had a higher likelihood of COVID-19 exposure from living in crowded conditions or in multigenerational households, being employed in jobs that could not be performed remotely, or relying on public transportation for commuting to work. Once infected, individuals from underserved communities experienced greater morbidity and mortality from COVID-19 related to poor access to healthcare and chronic medical comorbidities that are common among BIPOC communities. A contributing factor to both COVID-19 exposure and health disparities is structural racism experienced by and observed within minority communities. 5 These health disparities are particularly evident in Southern California, particularly South and Central San Diego, where a significant proportion of residents are BIPOC, experience poor housing and employment conditions, and suffer from co-occurring chronic health conditions that increase their risk of COVID-19 and negative sequalae. 6, 7 For achieving health equity in COVID-19 testing and vaccination access and uptake, public health interventions must have high acceptability and uptake across population groups, especially those that experience high rates of health disparities. Meaningful community engagement throughout phases of design, implementation, adaptation, and evaluation provides a critical, evidence-based, albeit resource-intensive approach to increasing vaccination access and uptake. [8] [9] [10] Health promotion interventions and their implementation are likely to have greater reach and impact when the focus is on interweaving health promotion strategies, practices, programs, and policies to fit within or enhance existing settings and environmental contexts rather than focusing solely on individual changes. 11 These principles are at the heart of implementation science, community-based participatory action research, and public health. In particular, the use of a Theory of Change framework and participatory cocreation methods through an assembly of Community Advisory Boards can ensure meaningful engagement of community stakeholders and maximize public health impact for underserved communities. Integrating these methods can accelerate accounting for the complex, dynamic, realworld contexts in which these strategies need to be implemented to promote equitable access and engagement. 9 Theories of Change have been broadly used to guide the planning, implementation, and evaluation of public health programs for underserved communities 12 and provide a comprehensive description and illustration of how and why a desired change is expected to happen in a particular context. Theories of Change provide a means for advancing "community science," that is, a community-university relationship where community knowledge contributes to the coevolution of the research questions asked, plus ideas for understanding and improving the methods of inquiry involved. 13 Community Science is a civically engaged approach to scientific inquiry and discovery that "flips the community-university dynamic, asking communities to identify civic priorities ripe for innovation and then to partner with researchers to address those priorities." 13 There is increasing emphasis on the importance of community engagement as a way to tap useful insights for research purposes. 14, 15 Theories of Change are customized to the specific community project, needs, and context and involve seven general steps. These include: (1) identify the long-term goal(s) (i.e., the "North Star"); (2) specify the contributing factors preventing the long-term goal(s) from happening; (3) map and connect the essential conditions necessary to achieve that goal; (4) identify basic assumptions about the context; (5) identify the implementation strategies needed to create the Table 1 provides a summary of the CAB members for each project. The CO-CREATE CAB included 22 members representing community residents, public health partners (i.e., public health researchers), and clinical partners (i.e., clinicians and administrators). The goal of the CO-CREATE CAB was to directly inform cocreated implementation strategies for a tailored COVID-19 testing program that is currently being implemented. The STOP COVID-19 CA CAB was composed of 11 community leaders representing 10 local grassroots community organizations and two policy partners. The goal of the STOP COVID-19 CA CAB was to inform materials and resources needed to support vaccine clinical trial participation and equity initiatives in underserved communities. Each CAB member was offered a $100 stipend per meeting for their participation. CAB meetings were conducted virtually using the Zoom and Miro platforms. Sessions lasted an average of 2 h every other week at a set late afternoon/early evening time. Professional Spanish translators were hired and participated in each CAB session to provide live, concurrent interpretation. A bilingual community outreach specialist from the Global ARC produced written translations of materials that were provided for both CAB prior to meetings, during meetings, and in follow-up communication, as needed. Participants were invited to complete an online engagement survey after each session to share their experience with the quality and extent of engagement. Data from the community engagement surveys will be reported in a separate publication. A total of seven sessions were conducted for each project to complete the Theory of Change process. Table 2 The CAB identified five factors contributing to disparities in COVID-19 testing and access to treatment for families with children and/or Through the Theory of Change process, the CAB reached a consensus on five factors contributing to disparities in clinical trial participation and testing and clinical trial participation for underserved populations. 20 When overlaying findings from the rapid review and our Theory Change processes, we found substantial crossover between the themes that emerged across these two sources. Data from these Theories of Change drive and will continue to inform community-engaged next steps that include: (1) implementation of a community-based testing program in collaboration with our clinic partners; (2) an Appreciative Inquiry process that directly engages the CAB through ongoing meetings to evaluate selection and implementation of cocreated COVID-19 public health strategies; (3) development of culturally, linguistically sensitive and accessible materials and resources to support current and ongoing COVID-19 mitigation needs such as vaccine uptake. Although we developed Theories of Change specific to addressing COVID-19 disparities, the Theory of Change process is generalizable to other public health topics or needs. In fact, our concurrent Theory of Change production across both projects illustrated the feasibility and utility of the Theory of Change process in engaging diverse and unique communities to address highly related but unique aspects of the COVID-19 pandemic, such as testing versus trial participation and vaccination. In addition, several general findings of actions needed to address the specific COVID-19 project needs were identified. These included tailored attention to language and literacy needs, service access and availability of structures or procedures, and appropriate inclusion of individuals who are providing and crafting resources and materials. Further, the Theory of Change process highlighted the overarching need for a community-inclusive public health system that extends beyond COVID-19 prevention and care services. This raises challenges from a broader "civic infrastructure" perspective with respect to better aligning research and action. While understanding the value of community input is a necessary first step, the goal should be to create supportive civic infrastructure in the form of resources, new rules of engagement, trust bridges (i.e., established partnerships or relationships that promote mutual respect and trust between stakeholders), and protocols necessary to enable community voices to be presented, heard and acted upon in significant ways. Hospitalization and mortality among Black patients and White patients with Covid-19 Latest Data on COVID-19 Vaccinations Race/Ethnicity Racial and ethnic disparities in COVID-19-related infections, hospitalizations, and deaths: A systematic review Racial and ethnic health disparities related to COVID-19 Structural racism and COVID-19 in the USA: a county-level empirical analysis Demographics Profile. Accessed HealthDAT -Diseases and Conditions. www.healthdat.org. 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The Milbank Memorial Fund Addressing COVID-19 using a public health approach: perspectives from the cancer prevention and control research network We would like to extend our gratitude for the time and wisdom shared by the University of California San Diego STOP COVID-19-CA and CO-CREATE Community Advisory Board members. https://orcid.org/0000-0001-6520-2920Borsika Rabin https://orcid.org/0000-0001-9837-7866 Additional supporting information may be found in the online version of the article at the publisher's website.