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Why our health system fails chronic disease patients

Kinan Muhammed, MD
Conditions
October 20, 2025
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John, a man in his early sixties, waited nine months to see me about memory problems. When he finally arrived, I had twenty minutes. Eighteen went to detective work, extracting fragments of history from conflicting accounts, piecing together months of decline from unreliable memories, and completing a paper-based subjective memory test. What should have been a full consultation of patient-focused care, was reduced to only a few hurried minutes at the end. He left with more tests ordered and a follow-up appointment in four months.

That experience is not unusual. Across neurology departments, we are trying to fit chronic, progressive diseases into an infrastructure built for more black and white presentations. The mismatch is not just inefficient. It erodes trust, overwhelms clinical teams, and wastes resources that health systems cannot afford to lose.

John’s results trickled in piecemeal: a scan one week, bloodwork the next. Each required another review, another letter to his primary care physician, another appointment. In between, symptoms shifted, family members improvised care plans, and everyone waited for the next brief window to connect.

The fundamental design flaw

Modern health systems are built to excel at acute care. Heart attack or stroke protocols are designed to run efficiently, as time is imperative to the outcome. Surgical pathways are optimized to get patients to the theatre when acutely needed. Emergency departments triage with speed to get patients through the system. Those successes rely on a clear formula: a defined problem, a focused intervention, a measurable outcome. If all goes to plan, case closed.

Parkinson’s and dementia care, unfortunately, does not fit that formula. They unfold over months and years, not days. Symptoms can fluctuate from hour to hour in ways patients cannot reliably recall months later. They manifest through dozens of overlapping symptoms interacting in complex, unpredictable patterns. These diseases do not resolve; they only progress.

I regularly see Parkinson’s patients who have had the condition for decades trying to recall whether a medication helped in one month and worsened in another, or if their tremor is now improved but sleep has become worse. Based on these fragments, medication adjustments that alter brain chemistry and that can also have significant side effects are then made. Six to twelve months later, the process is repeated.

The system assumes we can extract twenty years of disease management from twenty-minute snapshots taken twice a year. It is like trying to follow the plot of a feature-length movie, but only catching a few minutes at the start and middle, yet still expected to provide a thoughtful critique of the storyline and character portrayals.

The cascade of waste

This mismatch creates inefficiencies that ripple through the system. For John, uncertainty at that first visit triggered extra appointments to clarify the diagnosis. The delays meant months without treatment and support, impacting quality of life.

In Parkinson’s, once diagnosed, the cycle eventually repeats: trial-and-error medication changes based on the best judgments that can be made from subjective recall, adverse effects or acute events leading to emergency visits, and extra consultations to provide assistance. Between appointments, symptoms fluctuate without guidance. Families make urgent calls. Emails are sent with additional questions. Results land weeks later, each demanding review.

These fragments also consume enormous administrative time. Primary care physicians, who could handle routine adjustments if they had better visibility, instead refer back to specialists. Everyone operates partially blind, fragmented, duplicating effort and missing chances for early intervention.

We have solved this before; just not here.

Endocrinology faced a similar challenge decades ago. Diabetes patients cycled through crises until remote glucose monitoring allowed daily tracking, early intervention, and fewer hospitalizations. Continuous glucose monitoring further transformed their care, giving teams a real-time view and patients the ability to adjust their daily life accordingly.

Continuous data liberated clinical teams from detective work, letting them focus on timely, targeted treatment. Neurology has the same opportunity. We can now objectively measure tremor, voice changes, walking patterns, and cognition using tools patients already own. Entire care teams can share this data, replacing guesswork with clear trends. The technology exists. We just have not embedded it into the model.

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What needs to change

First, make symptoms visible between visits. Today, critical decisions rely on in-clinic snapshots. Parkinson’s alone can involve dozens of distinct motor and non-motor symptoms, each shifting daily. Without objective, ongoing tracking, care becomes guesswork. Continuous measurement would let clinicians see how patients are truly doing over time, adjust earlier, and avoid preventable crises.

Second, connect the full care team. Care should not stop at the neurologist’s door. Nurses, therapists, pharmacists, and primary care doctors all have roles to play, but they too often work in silos. Shared, objective information and clear protocols would allow each member to contribute meaningfully, easing the load on scarce specialists.

Third, patients and caregivers should be treated as active partners. Many are already tracking symptoms and adjusting routines, but their insights rarely reach the clinic in a usable form. Systems should capture and act on this work, co-creating care plans that reflect daily life, not just the clinic visit.

The window is closing.

Demographics alone guarantee that millions more will develop these conditions in the coming years. The neurologist shortage is deepening. The technology to transform care is here now. What is missing is the will to replace a reactive, episodic model with one designed for the realities of neurodegeneration.

For clinicians, that means recognizing the inefficiencies they navigate every day and pushing for systems that let them spend time providing real care, not trying to piece together fragmented information. For health system leaders, it means using existing reimbursement pathways to implement continuous monitoring before demand overwhelms capacity. For policymakers, it means creating incentives for integrated, data-driven models of care. And for patients and caregivers, it means demanding a seat at the table when those models are built.

John deserved more than a rushed consultation and a string of disconnected follow-ups. So do the millions living with Parkinson’s and dementia. Twenty-year diseases cannot be managed with twenty-minute medicine. That mismatch is not inevitable. It is a choice, and one we have the power to change.

Kinan Muhammed is a physician executive.

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