Looking for Zebras: Listening to Patients, Healing the Health System

The health ecosystem is a remarkable blend of science, technology, and human ingenuity. Yet, it remains profoundly fragmented, often treating symptoms as isolated anomalies rather than as signals of an interconnected whole. My family’s recent experience with my child’s long-standing health journey included the constant gastrointestinal discomfort of “median arcuate ligament syndrome” (MALS), migraines, and, more recently, the neuropathic pain resulting from tethered cord syndrome – all related to hypermobile Ehlers-Danlos Syndrome (hEDS).

Years of pain – a dim look into a future that might have included a feeding tube or motorized scooter – and being dismissed frequently by the health system – underscore medicine’s shortcomings. The journey from worsening digestive function and painful neuropathy to post-surgical relief highlights an essential truth: The patient’s voice is a critical diagnostic tool, yet it is too often ignored or undervalued.

In two prior published pieces for Medika Life, I explored the challenges of diagnostic complexity and health-systemic fragmentation. In Looking for Zebras, I wrote about medical mysteries and how patients with rare or atypical conditions are often dismissed or misdiagnosed in a system designed to manage the average, not the exceptional. In We Know the Health Ecosystem is Fragmented, Resulting in Rising Costs and Poorer Patient Outcomes, But What Are We Doing About It, I called for centering health delivery around patient outcomes – Health System Kinetics – emphasizing treating patients as whole people rather than their isolated symptoms.

Now, I revisit these themes with renewed urgency and a personal lens, advocating for a health system that listens—to patients, advocates, and their potential to improve people’s lives and reduce care costs.

Listening to the Patient: A Missed Opportunity

For many years, my young adult experienced worsening neuropathy—moving from occasional discomfort to using a cane and eventually a walker. Despite multiple consultations and MRIs, no definitive diagnosis emerged. Physicians, each specialized in their narrow field, treated her symptoms piecemeal: one focused on her spine, another on her joints, and yet another on her nervous system. The resolution was to vary pain medications to address symptoms, adding medicines on top of medicines. The bigger picture was lost in translation, as no single practitioner took ownership of connecting the clinical dots.

This experience is symbolic of the “silo effect” in medicine. Specialization has undoubtedly advanced and, at the same time, compartmentalized the field, creating gaps where Zebra-like conditions like hEDS fall. Worse, when patients like my child describe their experiences—pain, immobility, or even emotional distress—physicians begin to roll their eyes – the worst clinical response. Doctors like patient problems that are easy to fix.

In our case, it took a patient advocate—someone who personally understood hEDS—to guide us toward the right questions and the right specialists. Her lived experience as both a patient and an expert in navigating the system became the linchpin for my child’s eventual on-point diagnosis and treatment. This advocate understood what the health system did not: The interdependence of symptoms and the importance of listening to the patient and looking at the non-obvious puzzle piece.

The Power of Patient Advocacy

Patient advocates bridge the chasm between clinical expertise and lived experience. They translate medical jargon, connect patients with appropriate specialists, and, most importantly, validate the patient’s voice.

In listening to the advocate, I heard the voice of my late father-in-law, Burton Giges, MD, a brilliant clinician who always asked a critical question when addressing complex clinical cases: “What is the underlying cause of the symptoms?” However, as a parent, I was skeptical of the non-medically trained patient advocate who suggested root causes for GI problems whose resolution required surgery. One doctor we consulted from a noted teaching hospital even confronted us, “Who are you going to believe a patient or me?”

Thankfully, we pursued the patient advocate’s counsel and eventually traveled to California to MALS Surgical Specialist Dr. Danny Shouhed. The outcome was a successful MALS surgery to relieve pressure on the celiac artery and restore normal GI blood flow, resulting in normal digestive function. But, like many rare conditions, the medical maze continued.

Our advocate’s role went beyond logistics; she gave us hope when the system offered none. Her guidance led us to a team of specialized neurosurgeons at Brown University Rhode Island Hospital and Patricia Leigh Zadnik Sullivan, MD, Director of the Center for Spine Tumor and Chordoma Research, who confirmed the tethered cord syndrome diagnosis and later performed this complex surgery. Post-operative improvement was almost immediate: reduced neuropathic pain, increased mobility, and a promising sense of physical autonomy not experienced in years.

This transformative outcome raises a critical question: Why did it take an outsider to achieve what the health system itself should have delivered? Advocacy shouldn’t be a workaround but a core component of care.

Reordering Priorities: Outcomes Over Office Visits

The fragmented state of health is not just a disservice to patients; it’s a detriment to the system itself. Rising costs and poor outcomes are direct consequences of this disjointed approach. Each specialist operates within their silo, often incentivized by metrics like the volume of patients seen or procedures performed rather than by long-term outcomes.

In Reordering the Health System’s Priorities, patient outcomes must become the central organizing principle of health access and delivery. This isn’t just a lofty ideal; it’s a practical necessity. A system focused on outcomes would:

1. Promote interdisciplinary collaboration. Specialists must be empowered and incentivized to collaborate, share insights, and co-develop treatment plans.
2. Integrate patient voices. Patients are not passive recipients of care; they are active participants. Their experiences, preferences, and insights must inform individual care plans and broader systemic improvements – not given lip service.
3. Leverage data intelligently. Electronic health records and diagnostic technologies generate vast amounts of data, but it is only valuable if synthesized into actionable insights. Medical teams must use technologies – AI, ChatGPT, and LLMs to connect dots and see patterns that might usually be overlooked.

Had these principles been in place, my child’s correct diagnosis might have come months, even years, earlier. Instead, it took an advocate outside the system to untangle the threads.

The Hidden Costs of Ignoring Patients

When the health ecosystem discounts patient experience, it fails individuals and incurs added costs. Delayed diagnoses lead to prolonged suffering, reduced quality of life, and higher medical expenses. For our family, years of neuropathy meant not only physical pain but also the emotional toll of feeling unheard and unseen.

Moreover, the economic implications are staggering. Treating symptoms in isolation often leads to more office visits, redundant tests, unnecessary procedures, and avoidable complications. A study published in Health Affairs estimated that diagnostic errors alone cost the US health system billions annually, to say nothing of the human cost.

Listening to patients isn’t just compassionate; it’s cost-effective. Their insights can streamline diagnostic processes, reduce unnecessary interventions, and improve adherence to treatment plans—all of which contribute to better outcomes and lower costs. But to make that possible, medical teams need to be trained differently and incentivized to listen – not just hear words.

Transforming the System – Three Tips to Make Healthcare More Caring

So, how do we create a health system that listens?

1. Train Physicians to See the Whole Person

Medical education must evolve to emphasize holistic, patient-centered care. This means training doctors to consider the interplay of physical, emotional, and social factors—and to listen deeply to their patients. Breaking down silos requires structural changes, such as multidisciplinary clinics where specialists work side by side, sharing insights and jointly managing complex cases.

2. Integrate Advocacy into the Care System

Patient advocacy should be institutionalized, not incidental. Hospitals and clinics should employ patient advocates as part of care teams, ensuring every patient can tap into a guide to navigate the system’s complexities.  Payers should consider employing patients who can objectively call upon their experiences to ask questions as ambassadors for better care.

3. Measure What Matters

Health organizations must redefine success metrics. Instead of focusing on patient volume or efficiency, they should prioritize metrics that reflect patient well-being, such as functional outcomes, quality of life, and patient satisfaction. My child can now feel surfaces with their feet – impossible before because of painful neuropathy. They feel they are “walking on the moon.”

Communication is Part of the Care

Like many others, our journey highlights the system’s failures and amazing potential. It is a sobering reminder that while medical science has made extraordinary strides, it is still fallibly human. We look to the magic of AI, ChatGPT, and LLMs to resolve problems, but in our rush to innovate and specialize, we have lost sight of the most fundamental aspect of care: listening.

Patients are not puzzles to be solved or cases to be closed; they are people with stories, insights, and wisdom to share—they hope for a healthier future. By listening, we can bridge the gaps in care, transforming outcomes and the experience of the care journey.  

As we look forward, remember that the most powerful diagnostic tool is not a test or a scan but the patient’s voice. Let us not dismiss it – but use it.

[My gratitude to the Marfan Foundation, Nieca Goldberg, MD, CNS Summit, Rachel Lee, Patient Advocacy Consulting, FINN Partners, Danny Shouhed, MD, Residence Inn by Marriott, and the many patient advocates I’ve met through the years who champion the voice of people in the care trenches]