This article was originally published on Ask the Patient.

Welcome to the inaugural post of “Ask the Patient.” As a cancer survivor who has experienced medical gaslighting, medical bias, negligent procedures, medical errors, unnecessary surgeries, and various other challenges at one of the nation’s leading hospitals, I have a profound understanding of the challenges that patients with serious illnesses may face.

The medical establishment approaches care as a linear path from symptoms to diagnosis to recovery. But ask the patient: What does this linear path feel like when you are vulnerable, depleted by illness, and navigating a byzantine system?

What Healthcare Systems Assume

Healthcare systems view the patient’s journey as a straightforward, linear progression:

• Evaluation: The patient presents with symptoms.
• Diagnosis: Diagnostic tests are ordered and completed.
• Treatment: A treatment plan is developed and implemented.
• Recovery: The patient follows instructions and recovers (or doesn’t).

Logical. Efficient. Replicable.

What Patients Actually Navigate

For patients with chronic serious illnesses, the linear path often transforms into a complex obstacle course.

• Lost in the system: Navigating departments that fail to communicate with one another
• Bureaucratic barriers: Wrestling with insurance and a labyrinthine administrative and call center maze
• Medical gaslighting: Facing dismissal of symptoms and concerns without proper medical evaluation
• Medical errors: Confronting misdiagnoses and adverse outcomes as symptoms continue to worsen
• Treatment toxicities: Coping with the exhausting side effects of treatment therapies
• Financial barriers: Shouldering insurance claim denials and substantial out-of-pocket expenses
• Healthcare bias: Contending with stereotypes and biases that influence diagnosis, treatment, and pain management
• Work & family conflicts: Juggling caregiving responsibilities, work demands, and illness
• Social determinants: For marginalized groups, grappling with access, transportation, language, food, and housing barriers

Each obstacle compounds the others, creating a growing crisis for patients worn down by illness—a journey that bears no resemblance to the straightforward path healthcare is designed for.

Fundamental Design Flaw

This disconnect reveals a fundamental design flaw: healthcare is designed as if patients are healthy individuals (temporarily seeking care) who can absorb the shock of inhospitable systems, rather than vulnerable individuals facing serious illnesses with depleted capacities.

Those who created the system unconsciously assumed that patients were like them: privileged and mentally and physically equipped to navigate labyrinthine systems. However, this assumption fails on three levels.

• First, not all patients are privileged; patients come from diverse cultural, educational, and socioeconomic backgrounds
• Second, serious illness depletes everyone’s capacity, regardless of background, making labyrinthine navigation inordinately challenging when people need care the most. Even privileged patients struggle against medical errors, bureaucratic barriers, and systemic dysfunction when weakened by illness
• Third, there is a significant difference between navigating the system as a healthcare provider with a minor illness (possessing medical authority) and as a patient with a life-threatening condition (and no authority)

For patients who lack privilege, capacity, and empowerment—those from marginalized backgrounds facing serious illness—the combination can be catastrophic. They frequently encounter inadequate care and insurmountable navigational challenges, with sometimes dire consequences.

Why This Flaw Persists

Medical literature and education reduce patients to data points, operating under the assumption that capturing demographics and clinical data equates to understanding the patient experience. However, data doesn’t capture the experience of having cancer symptoms overlooked as your condition worsens or of navigating bureaucratic mazes when you’re exhausted from treatment.

Without fully understanding the obstacles patients face—and possibly influenced by medical paternalism—the industry has come to assume that healthcare challenges stem from patients rather than from the systems that care for them.

This mindset has led health systems to focus on helping patients navigate dysfunction more effectively, rather than addressing the root causes of healthcare’s navigational issues. Efforts include patient education, navigation assistance, and AI tools designed to help patients tackle these challenges. Although these efforts have value, they perpetuate dysfunction. Rather than confronting poorly designed systems, they place the responsibility on patients to navigate flawed systems more effectively.

This focus on fixing patients rather than systems reflects a broader pattern: an industry built to heal has become so consumed by the metrics it produces that it has lost the ability to recognize the iatrogenic harm it inflicts on patients through its own flawed processes and biases. Quality improvement initiatives optimize for performance metrics, while the deeper human suffering—the dismissals, fears of being harmed, navigation exhaustion, and violations of dignity—compounds invisibly.

This data obsession creates a blind spot: Healthcare can measure patient behaviors it considers problematic, but its metrics capture only a small portion of what patients actually endure (the tip of the iceberg). The real barriers and unaccounted suffering—the harm that doesn’t generate data points—remain completely invisible to healthcare’s measurement systems.

Designed for Data, Not Humans

Meanwhile, patients with serious illnesses navigate an entire underwater mountain of systemic barriers that never appear in any database. By conflating performance data with human understanding, healthcare perpetuates its fundamental design flaw: optimizing systems for metrics instead of the humans who navigate them.

Healthcare’s disconnection from the patient experience is ingrained in every layer of its operations:

• Department silos fragment care into isolated metrics, slicing patient experiences into separate datasets while losing sight of the whole person
• Medical education prepares providers to evaluate clinical data, but fails to address patients’ lived experiences
• Care protocols optimize for efficiency and compliance while ignoring the human impact of protocols on patients weakened by illness
• Hospital workflows view patients as cases to process rather than whole human beings
• Communication systems require patients to understand medical terminology instead of adapting medical language for patient understanding
• Quality metrics assess clinical success while neglecting the iatrogenic harm embedded in healthcare delivery

Together, these practices illustrate how healthcare prioritizes operational metrics over the human experience. The healthcare sector often confuses patient-centered metrics with patient-centered care, failing to recognize the vital distinction between designing for operational metrics and designing for human needs.

Designing for Sick People

Human-centered design involves meeting people where they are: in their vulnerable and powerless states. In contrast, the existing healthcare model prioritizes operational efficiency, placing the burden of navigating complexities and deficiencies on ill individuals, who often have the least ability to cope with these challenges.

For healthcare to become truly human-centered, it must adhere to five essential rules for designing for sick people:

1. Patients suffering from illness and treatment often feel exhausted, lacking both the physical and mental energy to cope with stressful, inhospitable systems.
2. Systems must be designed to absorb complexity instead of shifting the burden onto vulnerable patients and expecting them to manage it.
3. Every interaction with the healthcare system should reduce the burden on patients rather than increase it.
4. Providers should be responsible for ensuring patient comprehension of health communication rather than offloading this responsibility onto them.
5. Systems that exhaust medical practitioners contradict human-centered principles—good design supports both those who give and receive care.

This isn’t about band-aid fixes (such as patient navigation or empathy training) —it’s about designing systems that work for people who are sick and exhausted. This captures the essence of what human-centered care ought to represent in healthcare

© Sylvie Leotin / Ask the Patient

Ask the Patient Challenge

To deliver true human-centered care, ask yourself:

• Am I designing for someone like me when I’m healthy, or for someone who is sick, exhausted, and overwhelmed?
• Do my success metrics account for the navigational struggles health systems create, or just clinical and operational outcomes?
• When patients struggle with my protocols, do I blame the patient or examine the protocol?
• Before I assume patients are noncompliant or difficult, have I considered what obstacles they are facing?
• Before implementing solutions, have I learned from patients how the issues I address manifest in their lived experiences?
• Could the systems I’ve created be navigated by someone who is drained by serious illness and/or comes from a marginalized background?

When healthcare finally integrates the lived experiences of patients into how it designs and delivers care, we can transform the obstacle course into a healing journey.

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Author:

Sylvie Leotin is a cancer survivor and human experience design leader who became the first patient to spearhead a major academic research initiative, securing $1.75 million in funding to study healthcare delivery gaps. As the Principal Investigator, she partnered with the Emory School of Medicine to develop groundbreaking strategies that reshape how medical education addresses patient experiences. Sylvie serves on the Editorial Leadership Board for the Journal of Patient Experience, delivers keynote speeches at national medical conferences, and guest lectures at top medical schools. Her work has been featured in the Boston Globe, STAT News, and peer-reviewed medical journals. Through “Ask the Patient,” she deconstructs the hidden system failures encountered by patients and offers strategies to tackle them. Subscribe at AskthePatient.com.