Giving patients agency in healthcare by constructing actionable stories from data.

The majority of the healthcare projects I have tackled as designer—even those aimed at delivering "patient centric" care—are targeted at clinicians and other care providers. Medicine from this perspective is overflowing with challenges, many of which are tangled in technical infrastructure, or sit at the level of service design. The complexity of medicine itself—the struggle to discover, describe, and address what is wrong with a patient—often seems trivialized in comparison, and not unjustly. From the perspective of patients, however, medicine itself is absolutely the problem, and navigating illness is a journey that frequently doesn't match the systems and services that modern medicine has and continues to adopt.


The desire to understand what this journey actually looks like led me to combine my two primary interests in an ethnographic exploration of how narrative can help doctors serve patients, but more importantly, help patients better serve themselves.

© 2015

{narRecuperate} [narrate + recuperate] is a system that helps patients acquire proficiency articulating their own health concerns. It is born of the idea that the future of healthcare must lie in the hands of patients, while acknowledging that most people have neither the expertise nor the self-reflection skills necessary to manage their own care. The system harnesses the way people narrate their experiences: wrought with questions, discoveries, emotional pain, circular logic, and, at times, remarkable clarity. It then blends those tendencies with deep knowledge reservoirs and data structures only penetrable by physicians, creating an ecosystem of interactive visualizations aimed at increasing patient agency while not detracting from physician authority. The goal is to build a communication artifact, not to architect a battlefield.


The system is underpinned by insights gained from extensive face-to-face interviews with people—some with minimal health concerns, others suffering through unimaginable situations—and contextualized by what I have learned about American healthcare through working within the University of Pittsburgh Medical Center (UPMC): a top ranked but also heavily commercialized hospital system. The design itself is inspired by work in fields spanning anthropology, art, literature, film, information architecture, biomedical engineering, and behavioral psychology.


This thesis presents an early concept for an online, screen-based portal, but the ideas contained within the design do not rely on any particular technology. The vision is an ubiquitous patient-centered system that would continuously change with a person over the course of a lifetime: an ever-evolving record of self-and-health. Explore the full thesis.