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    © Ruisi Chen 2025

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    Lost (in) Voice

    An interactive simulation revealing how structural pressures systematically dismantle and overwrite patient narratives.



    Date & Course
    Aug 2025 - present
    Games for health and well-being
    MIT game lab     Categories
    Medical Humanities
    Systems Thinking
    Critical Game Design     methods
    Archival research
    narrative design
    prototyping
    playtest     Tools
    Figma
    Web Dev (React)
    Adobe suite



    THE MOMENT

    My time at Harvard Medical School began with a haunting dissonance. I spent my days dissecting the anthropology of social suffering, analyzing how the reductive biomedical gaze can inadvertently dismantle a patient’s local moral world. Yet these concepts remained theoretical until I traced their impact in the devastating case histories found in works like Linda Villarosa's Under the Skin, Anne Fadiman's The Spirit Catches You and You Fall Down, and Ezekiel Emanuel’s Prescription of The Future. I was struck by the dissonance between these rich, human stories and the sterile, fragmented nature of clinical documentation.

    I needed to understand how this erasure manifests in the tangible, mundane reality of a fifteen-minute clinical appointment. Secondary research revealed quantifiable erasure: race-based algorithms built on discrimination, the 18-second interruption rule, the 16-minute gender gap in pain medication, and the 4.5-year odyssey for autoimmune diagnosis in women. These numbers are the invisible walls of the exam room.

    Lost (in) Voice is an attempt to make factors of healthcare miscommunication visible through a playable thought experiment. It asks the user to step into a provider’s role and discover how the architecture of modern medicine forces us to dismantle the very stories we are trying to save. 

    How do we present systemic violence in forms other than lived experience and intellectual framework? How does a patient's lived truth get translated, and often lost, when it enters the system? 

    THE RESEARCH PROCESS





    FIVE THEMES OF  MISCOMMUNICATION


    My research synthesized the complex dynamics of healthcare into five core categories of narrative erasure found in modern hospital architectures.
    • Erasure by Dismissal (Bias) The active invalidation of patient testimony based on identity. Research indicates women wait an average of 16 minutes longer than men for pain medication and face a 4.5-year diagnostic odyssey for autoimmune conditions, revealing a systemic "trust gap" where subjective reports are overwritten by clinical stereotypes. A 2008 NIH study found women are 13-25% less likely to receive opioids for pain. Historical precedents, such as race-based algorithms that assume Black patients have lower lung capacity (0.88-0.90 correction factor), further illustrate how bias is codified into medical practice.
    • Erasure by Mistranslation (Language) The semantic gap between illness (the lived experience) and disease (the biomedical taxonomy). When the system forces a translation of metaphorical descriptions—like "heavy" or "burning"—into flattened medical jargon, the specific severity and nuance of the condition are stripped away, often triggering incorrect algorithmic protocols. This mirrors linguistic barriers where metaphorical descriptions of symptoms are misinterpreted as non-compliance.
    • Erasure by Fragmentation (System Silos) The disintegration of a holistic story across disconnected departments. As providers work autonomously without a unified care plan, the patient's narrative falls into the gaps between organizational silos. No single entity holds the full context, reducing the patient to a series of disjointed data points and leading to contradictory treatments and polypharmacy errors.
    • Erasure by Premature Closure (Time) The truncation of a narrative due to resource scarcity. Seminal studies reveal that physicians interrupt patients after an average of just 18 seconds. This forces a diagnosis based on incomplete, "anchored" data, permanently excluding secondary symptoms from the record before they can be spoken, leading to diagnostic errors.
    • Erasure by Filtering (Interface) The "context collapse" caused by the Electronic Medical Record (EMR). The rigid architecture of Structured Data Entry forces providers to de-contextualize complex, relational narratives in real-time to satisfy documentation requirements, stripping symptoms of their causal links to fit into discrete checkboxes. This can prevent the identification of complex syndromes that require relational data.


    THE DESIGN PROCESS

    1. VISUALIZING ERASURE


    To translate invisible systemic forces into a tangible interface, I needed a visual metaphor that could hold both organic complexity and structural decay. Drawing upon Kandinsky’s theory of synesthesia and contemporary generative AI spectrograms, I envisioned developing a "living" audio-visual language.
     

    The Branching Tree became the central interface metaphor: representing the patient’s narrative as an organic entity that is systematically "pruned" by clinical algorithms. The design challenge was to ensure the interface did not just display information, but actively demonstrated the loss of fidelity as the player moved from the "roots" (the patient's voice) to the "canopy" (the clinical record).

    2. SYSTEMIC ARCHITECTURE

    With the visual metaphor established, I developed a narrative map to serve as the project's architectural blueprint. This diagram visualizes the "topology of loss" across all five erasure themes. By mapping the specific trajectory of each persona—from the "Root" of the patient's holistic testimony through the "Trunk" of systemic intervention to the "Canopy" of the final, sterilized medical record—I defined the precise nodal points where the system forces the narrative to fracture. This structural planning was essential to ensure the game's branching logic rigorously enforced the theoretical framework of erasure.

    3. ANALOG PROTOTYPE & PLAY TEST


    I then utilized paper prototyping to stress-test the procedural rhetoric of this architecture—evaluating how the game's rules function as an argument about the real world. I physically mapped the five themes onto paper cards to simulate the "handoffs" and "overwriting" inherent in medical documentation.
    Insights from playtest: without constraints, players acted as passive listeners rather than active providers, reporting that the experience felt "like a test for MD students". To correct this, I introduced a Time Resource Economy. By giving the player limited "tokens" to spend on listening, I forced them to make the same efficiency-driven trade-offs that real providers face. This shifted the player’s role from an observer of the story to a complicit agent of its erasure.

    4. REHINKING GAME THEORIES & MECHANISMS
  1. From Theory: The "18-Second Rule" (Beckman & Frankel) regarding physician interruption.
        --> To Mechanic: A Time Economy where the player is interrupted by system alerts, forcing premature closure of the narrative to save "time tokens."
  2. From Theory: "Diagnostic Overshadowing" and bias in pain management.
        --> To Mechanic: Overwriting, where selecting a "clinical shortcut" (e.g., checking history of anxiety) physically obscures the patient's report of physical pain.
  3. From Theory: "Context Collapse" in Electronic Medical Records (Wachter).
        --> To Mechanic: Filtering, where the interface forces the player to break a holistic story into isolated, non-relational checkboxes.


    4. DIGITAL PROTOTYPING




    Moving to a web interface (Claude), I transformed the paper mechanics into a digital decision tree. The visual language mimics the sterile aesthetic of an EMR, lulling the player into a false sense of objective efficiency while the underlying tree structure prunes the patient's story based on their clicks.
    The final prototype functions as an embodied thought experiment. Upon submitting a diagnosis, the system reveals the "Erased Truth"—the original patient node that was discarded by the player's choices. The "Aha moment" is designed to be one of complicity. Players realize that by playing the game "correctly" (efficiently, following protocols), they failed the patient. This reveals that the error lies not with the individual's intent, but with the structural design of the system itself.

    VIDEO DEMO




    NEXT STEPS

    I am currently refining the digital prototype to transform the navigation visualization. The goal is to move from a static map to a dynamic representation of loss, where unchosen narrative branches visibly wither and silence, reinforcing the permanence of erasure in the medical record.

    GAME THEORY REFLECTION


    The following frameworks challenged me to move beyond "gamification" and instead use play as a method of sociological inquiry.
    • Design as Critique (Fallman)Fallman’s concept of "Design Exploration" inspired me to reject the role of the designer as a problem-solver. Rather than attempting to "fix" the EMR interface (Design Practice), I used the artifact to critique the artificiality of clinical interactions. This framework allowed me to build a game that does not optimize the system, but rather exposes the "societal values" (efficiency over empathy) embedded within it.
    • The Prototype as Filter (Lim, Stolterman, Tenenberg) Lim’s definition of prototypes as "filters" altered my approach. I realized that early fidelity was a distraction. I deliberately filtered out the "Appearance" dimension to maximize the resolution of the "Interactivity," isolating the project's core economic principle: the tragic trade-off between time and truth.
    • Play as Complicity (Sicart) Sicart defines play as a "disruptive" mode of being, where the player appropriates the system. Lost (in) Voice was built to invert this dynamic. I wanted to explore what happens when the system disrupts the player. By forcing the user into "instrumental play"—focusing on goals and efficiency—I created a tension where the player’s desire to "win" (diagnose correctly) makes them complicit in the erasure of the story.
    • The Portfolio as Theory (Gaver & Bowers) The project is modeled on the logic of the "Annotated Portfolio.". By juxtaposing the final digital interface with the initial archival research, I am not just documenting a process, but annotating the "family resemblances" between disparate forms of erasure. This format allows the specific artifact (Lost (in) Voice) to articulate a broader theory about the fragility of human narrative in digital systems.


    REFERENCES:
    Beckman, Howard B., and Richard M. Frankel. "The Effect of Physician Behavior on the Collection of Data." Annals of Internal Medicine, vol. 101, no. 5, 1984, pp. 692-696.

    Dusenbery, Maya. Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. HarperOne, 2018.

    Emanuel, Ezekiel J. Prescription for the Future: The Twelve Transformational Practices of Highly Effective Medical Organizations. PublicAffairs, 2017.

    Fadiman, Anne. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. Farrar, Straus and Giroux, 1997.

    Groopman, Jerome. How Doctors Think. Houghton Mifflin, 2007.

    Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. The National Academies Press, 2003.

    Villarosa, Linda. Under the Skin: The Hidden Toll of Racism on American Lives and on the Health of Our Nation. Doubleday, 2022.

    Wachter, Robert. The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age. McGraw-Hill Education, 2015.