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

Abstract

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. 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. 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. 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. There is room for deeper and more meaningful community involvement in the development of health-related data visualizations geared towards them.