Visualizing the Maternal Health Journey for Learning Health Systems: Mixed Methods Combined Experience Approach

The United States faces a persistent maternal mortality crisis, with rates far higher than those in other high-income nations. The mortality rate among Black women is more than 3 times that among White women. Traditional data visualizations, such as bar and line charts, often emphasize aggregate outcomes, masking inequities and failing to reflect patient-level experiences.

This study aimed to address the gaps by taking a systems view and developing a Visualized Combined Experience (VCE) diagram, which is an innovative tool that integrates persona-based storytelling with data visualization to provide a more comprehensive understanding of maternal health outcomes. Specifically, the following research questions were explored: (1) How can the VCE diagram approach be applied to illustrate maternal mortality disparities in the United States? (2) To what extent does this integrated visualization technique reveal connections between individual patient experiences and population-level health outcomes that traditional visualization methods do not? (3) How can the VCE diagram inform a learning health system (LHS)?

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

The VCE diagram revealed critical connections between individual experiences and population-level disparities. When examining mortality rates per 1000 births, Black women had a high rate of 51.2, compared with 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 in aggregate data. The VCE diagram supported a more efficient and empathetic understanding of maternal health outcomes.

The VCE diagram bridges micro-level patient experiences with macro-level population data, holding promise to enhance service evaluation, delivery, and design, and improve health care outcomes. The VCE diagram provides a replicable framework for data visualization that highlights systemic disparities often hidden in aggregate data. Moreover, the availability of structured human experience and service outcome data can provide robust context-specific and situational data to foster a culture of organizational learning and continuous improvement via an LHS. The LHS's knowledge translation loops provide a conduit to improve patient experiences and 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.