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MDes MASTER'S THESIS
GETTING BETTER FASTER =
TELLING BETTER STORIES
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.
LET'S TELL THE STORY WELL THE FIRST TIME. {narRecuperate} is a concept for a patient health portal rooted in the ways that people naturally tell stories about their lives. It builds bridges between the qualitative and anecdotal understanding of medicine that many non-experts possess, and the evidence-driven expertise of their care providers.
UNCOVER THE ‘WHY.’ This tool is an interactive visualization of pharmaceutical information. Aside from providing the instructions that every medication already comes with, the portal lets you set a regimen for yourself from all your medications, displays the concentration of each medication in your blood over the course of the day (a standard indicator of effectiveness & safety). It then lets you compare your ideal regimen with your actual behavior each day, and provides a place to experiment with generics, alternatives, and different dosages to see their effects before you medicate.
SHIFT PERSPECTIVE. Travel through your body, organ by organ, and begin to understand how interrelated everything is. Follow a single medication through every organ and learn how a prescription you’re using to treat a heart problem is simultaneously harming your kidneys. Or, stick with an organ system, and understand how everything in your life stacks up to paint a bigger picture. Every bit of information comes with links to other modes (blog, medication manager, etc.), so you can take notes, and take action as you learn.
VISUALIZE CAUSE & EFFECT. It’s easy to figure out that a cup of coffee at 8pm might make sleeping difficult, but maybe a little bit harder to figure out how many things in your life are slowly causing your stents to fail. When everything we do seems to have consequences that are both dire and vague, intelligent choices can be difficult. By combining patient and physician supplied information into an interactive tree chart, you can start to take informed steps toward an improved lifestyle. Turn on and off any assortment of nodes and watch what happens to your prognosis.
DEMYSTIFY THE ABSTRACT. At first glance, the blogging functionality of {narRecuperate} is much like any other. But dig a little deeper, and it becomes a powerful tool for turning abstract thought and emotion into valuable information. The system scans each entry for key words, tone, and repeating structures. It then presents the connections it finds, so you can see repeating thoughts and behaviors you may not have fully understood. The tool doesn’t treat each connection it finds as a rigid, meaningful truth, it just encourages you to take a second look, sometimes through another lens.
CENTRALIZE KNOWLEDGE. This is a place for all of your medical records, insurance documents, lab results, self-tracking data, and prescription orders. In addition, it allows you to access numerous top level medical journals, blogs, and other media. Find information about your condition that is a) at the right level for you, b) save- and sortable, and c) verified by a community of experts as well as other patients. But this isn’t just a vault. Combine your own experiences with cutting edge research and reports from the community, crafting crystal clear narratives for yourself and your doctors.
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{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.