Hilary Wray
This brief addresses the challenge of representing lived healthcare experiences that are fragmented, cyclical, and distributed across clinical and digital systems. Tools such as linear journeys and static maps struggle to capture this complexity, often reducing lived experience into simplified pathways. This research frames this as a problem of representational failure within healthcare design.
In response, it proposes a design-led, systems-oriented methodology centred on dynamic experiential mapping. Drawing on feminist and participatory design, alongside research through design, mapping is positioned not as a static output but as an evolving and generative process. The methodology develops through interconnected methods, including autoethnographic mapping, survey engagement, and evaluation of existing tools, which collectively inform the design of an interactive mapping system.
The resulting Care Ecosystem Mapper, a purpose-built interactive digital web-based tool, enables participants to construct and explore their own lived experiences through a node/touchpoint-based interface they author themselves. Thus, shifting mapping from researcher-led representation to participatory sensemaking. Through interaction, mapping becomes an experience in itself, supporting reflection, articulation, and connection across individual and system perspectives.
Grounded in the context of Polyendocrine Metabolic Ovarian Syndrome (PMOS), this work demonstrates how participatory mapping can function as a scalable methodology for understanding lived care systems. It contributes to systemic design by enabling more dynamic, collective, and experiential approaches to complexity and offers a transferable framework for engaging with other fragmented, long-term care contexts.
Keywords: participatory mapping; systems-oriented design; lived experience; women’s health; PCOS; digital health; co-design