Community engagement in the development of health-related data visualizations: a scoping review.

OBJECTIVE: This scoping review aims to address a gap in the literature on community engagement in developing data visualizations intended to improve population health. The review objectives are to: (1) synthesize literature on the types of community engagement activities conducted by researchers working with community partners and (2) characterize instances of "creative data literacy" within data visualizations developed in community-researcher partnerships. METHODS: Using the 2018 PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines, the review focuses on peer-reviewed journal articles from 2010 to 2022 in PubMed, Web of Science, and Google Scholar. A community engagement tool was applied to the studies by independent reviewers to classify levels of community engagement, social determinants, and vulnerable populations. RESULTS: Twenty-seven articles were included in the scoping review. Twelve articles worked with vulnerable populations. Four articles attempted to alleviate barriers to representation in their respective studies, with addressing language barriers being the most prevalent approach. Thirteen articles considered social determinants of health. Sixteen studies engaged in iterative approaches with intended users when developing the visualization or tool. DISCUSSION: Only a few significant examples of creative data literacy are incorporated in the studies. We recommend a specific focus on engaging intended users at every step of the development process, addressing language and cultural differences, and empowering intended users as data storytellers. CONCLUSIONS: There is room for deeper and more meaningful community involvement in the development of health-related data visualizations geared towards them.

Working with Data in Adult English Classrooms: Lessons Learned about Communicative Justice during the COVID-19 Pandemic.

Throughout COVID-19, health officials have relied on data visualizations to communicate urgent messages about the spread of the virus and preventative measures. Relatively few efforts have employed participatory engagement with communities who have experienced a disproportionate burden of COVID-19 illness to shape these communications. Sociologist W.E.B. Du Bois viewed data visualization as an approach to changing the way people think about themselves. This paper describes a community-engaged approach to data literacy skill-building with bilingual Latina learners in an adult English program in Northern California, Bay Area. The curriculum combines data visualization activities with language instruction and preventive health themes. Early work on COVID-19 in 2020-21 emphasized improving health knowledge and message interpretation but later shifted to a critical data literacy perspective, focusing on myth-busting, improving risk messaging in their own social networks, and supporting learners to see the power of their own experiences in data story-telling processes. This pedagogical approach, guided by Charles Brigg's idea of communicative justice priorities, locates adult learners' data visualization work as part of a broader effort to be included in the perspectives that shape knowledge production in today's healthcare system. This approach can be used to examine disparities in information access in linguistically minoritized communities and guide future education interventions.

Adult Basic Education: Community Health Partnerships and Health Disparities.

Background: Adult Basic Education (ABE) is the national system that offers adults with low literacy and/or limited English with educational services in reading, writing, math, technology, and communications from basic levels to high school equivalency, with specialty programs in transition to community colleges and family literacy. Brief Description of Activity: To show the role of ABE in increasing health literacy in low literate and/or limited English populations through partnership with community health organizations (CHOs). Implementation: This article was developed through a collaborative thought process over a period of 8 months with experts from the field of ABE in development of health literacy within low literate and/or limited English populations. It describes the research that links low literacy and/or limited English with poor health, and introduces how ABE and CHOs have addressed these issues together. It also introduces research on the impact on learners of integrating health into ABE. Results: ABE learners have consistently shown a strong interest in learning about health for themselves and their families, and health content energizes ABE instruction. Learners report improvements of basic health knowledge, their confidence communicating with health care professionals, enhanced self-efficacy, and intention to make changes in such health behaviors as diet and tracking blood pressure. Partnerships between ABE programs and their local CHOs strengthen the teaching/learning process and can be mutually beneficial. ABE provides access to hard-to-reach populations, a safe learning environment, and teaching expertise. CHOs provide health expertise, preventive health screenings, and access to treatments. Lessons Learned: The link between low literacy and poor health is no longer disputed. ABE programs and many CHOs share a common mission and commitment to serving vulnerable populations. Stronger partnerships between these organizations should be viewed as a viable strategy for addressing health disparities. A coordinated effort of community health centers across the nation is required to meaningfully respond to health disparities as a national social issue. [HLRP: Health Literacy Research and Practice. 2019;3(Suppl.):S1-S7.]. Plain Language Summary: This article introduces ABE and the role this system plays in improving health literacy within populations with low health literacy and/or limited English populations. It details the educational services the system provides, how health content has been integrated into instruction, the impact on learners, and how partnerships between ABE programs and community health services strengthen the work.

The Health Literacy of U.S. Immigrant Adolescents: A Neglected Research Priority in a Changing World.

Immigrant adolescents are the fastest-growing sector among U.S. youth, but they receive little attention in health literacy research. Immigrant adolescents are a diverse population tasked with mastering new literacies while also navigating new social systems. Many immigrant adolescents serve as important linguistic and cultural resources in their families and local communities, and yet their contributions (and struggles) as new navigators of our health care system remain invisible. In this commentary article, we argue that health literacy researchers need to devote more attention to immigrant adolescents and the pathways by which they learn new language and literacy skills while also developing their own health habits and behaviors. We contend that the study of immigrant adolescents provides a critical window into health literacy as a socially and historically situated practice, specifically how immigrant adolescents' transnational experiences shape their learning of new health literacy practices. With a coordinated interdisciplinary research agenda on immigrant adolescents, the health literacy field will expand its empirical base for what becoming "health literate" looks like in today's globalizing world.

ESL participation as a mechanism for advancing health literacy in immigrant communities.

A reliance on the conceptualization of health literacy as functional skill has limited researchers' views of the adult English-as-a-second-language (ESL) context as a site for health literacy interventions. To explore the contributions of alternative views of literacy as social practice to health literacy research, the authors examined teacher survey data and learner outcomes data collected as part of a multiyear collaboration involving the California Diabetes Program, university researchers, and adult ESL teachers. The survey results (n=144 teachers) indicated that ESL teachers frequently model effective pedagogical practices that mediate social interaction around health content, the basis for acquiring new literacy skills and practices. In the classroom pilot (n=116 learners), the majority of learners reported they had learned about diabetes risk factors and prevention strategies, which affirmed existing healthy behaviors or prompted revision of unhealthy ones. About two thirds of the learners reported sharing preventive health content with members of out-of-school social networks. This study represents a first step in research efforts to account more fully for the mechanisms by which social interaction and social support facilitate health literacy outcomes in ESL contexts, which should complement what is already known about the development of health literacy as functional skill.

Reports from the field: engaging learners as interpreters for developing health messages -- designing the 'Familias Sin Plomo' English as a Second Language curriculum project.

California has a recently documented problem of trans-national environmental lead exposures in imported foods from Mexico but there is limited health information available in immigrant communities about this problem. This report highlights collaborative work with English as a Second Language (ESL) learners to critically review research data on lead exposures and reframe prevention messages about lead contamination of imported foods. These messages are now integrated into ESL curricula for dissemination to Spanish-speaking populations that are disproportionately affected by lead poisoning. This 'learners as interpreters' approach is a participatory method that can be applied across a wide range of public health activities. ESL learners emerged as ideal partners in developing curriculum for lead poisoning prevention for several reasons: the parents expressed strong interest in lead poisoning prevention, several have children under age 6 when lead screenings are recommended, and many have emigrated from regions in Mexico where lead hazards were identified.