JMIR Publications

ABSTRACT

Background:

The United States (US) faces a persistent maternal mortality crisis, with rates far higher than those of other high-income nations. Black women experience more than three times the mortality rate of White women. Traditional data visualizations such as bar or line charts often emphasize aggregate outcomes, masking inequities and failing to reflect patient-level experiences.

Objective:

This study aims to address these gaps by taking a systems view and developing the Visualized Combined Experience (VCE) Diagram, an innovative tool that integrates persona-based storytelling with data visualizations to provide a more comprehensive understanding of maternal health outcomes. Specifically, by exploring the following research questions: (1) How can the VCE Diagram approach be applied to illustrate maternal mortality disparities in the US? (2) To what extent does this integrated visualization technique reveal connections between individual patient experiences and population-level health outcomes that traditional visualization methods don’t? (3) How can the VCE Diagram inform an LHS?

Methods:

This mixed-methods study utilized publicly available quantitative data from the US Centers for Disease Control and Prevention (CDC), and adapted qualitative data from the ProPublica award winning investigative series ‘Lost Mothers’ to construct the VCE Diagram through a seven-step process combining the following elements: (1) a composite persona derived from publicly available narratives, (2) a journey map illustrating patient touchpoints and experiences, (3) emotive elements of the patient (4) Sankey Diagram of population-level maternal mortality outcomes, (5) a ‘Closer Look’ inset to unmask disparities obscured in aggregate data, (6) evaluation segment, and (7) segment integration.

Results:

The VCE Diagram revealed critical connections between individual experiences and population-level disparities. When examining mortality rates per 1,000 births, Black women accounted for 51.2 maternal deaths, compared to 16.8 for White women, 14.3 for Hispanic women, and 10.2 for Asian women. The relationship between diagnostic delay and population-level mortality was revealed, with the ‘Closer Look’ inset demonstrating how disparities can be obscured via aggregate data. Thus, the VCE Diagram yielded a more efficient and empathetic understanding of maternal health outcomes.

Conclusions:

The VCE Diagram bridges micro-level patient experiences with macro-level population data, holding promise to enhance service evaluation, delivery, and design, and improve healthcare outcomes. The VCE Diagram provides a replicable framework for data visualization that highlights systemic disparities often hidden in aggregate views. Moreover, the availability of structured human experience and service outcome data can provide robust context-specific and situational data to foster a culture of continuous improvement and organizational learning via a learning health system (LHS). The LHS’s knowledge translation loops provide a conduit to improve patient experiences, reduce morbidity, and mortality across populations and health systems. Future work will include usability testing across diverse audiences to assess interpretability and refine applications in LHSs. Clinical Trial: N/A