NarRecuperate : Giving patients agency in healthcare by constructing actionable stories from data

2013-05-13T00:00:00Z (GMT) by Anna von Reden

Abstract. {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 aim 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 document 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 evolve with a person over the course of a lifetime: an ever-evolving record of self-and-health.




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