I first thought I had ALS while rushing to a meeting, and noticing my right leg was acting sluggish. As a retired physician and pharmaceutical executive, I immediately recognized the signs. After my meeting, I called my wife and told her my suspicions.
I was right; doctors formally diagnosed me three months later, in December 2015.
Like all rare diseases, my journey since then has been long and arduous. The symptoms gradually worked through my body, and I have used a wheelchair for many years. But, besides slowly losing my bodily autonomy, one of my biggest challenges has been navigating the healthcare system on the other side, as a patient.
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Nearly 9 in 10 adults struggle to understand and act on their health data. That is only exacerbated by the deep fragmentation of the healthcare system. If I thought it would be more straightforward for a physician, I was wrong. I was forced to jump through hoops and endure the many complexities of the system, just like everyone else.
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Our healthcare system is designed around the administration and the provider, not the patient. It’s also where the majority of AI healthcare investment goes, according to the 2026 Silicon Valley Bank report.
When a patient sees an electronic health record, they see incomprehensible medical shorthand, lab values, CPT, and ICD-10 codes. They are medical and legal documentation, not a tool for patients to use to understand and advocate for their own care.
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Every institution also has its own patient portal. Patients like me who have visited multiple clinics, specialists, or hospitals (I’ve sought care at eight!) are left managing several portals, each with its own login credentials, billing systems, and partial slices of our medical history.
After years of this, my medical data piled up – 150 pages of it, in fact – and became more overwhelming each time I stepped foot in a doctor’s office. For every new appointment, my story became more difficult to communicate.
Modern health stories only get more complex when we consider that we have access to more health data than ever. Our wearable tech gives an electrocardiogram on demand, detects sleep apnea, tracks vital signs, and so much more. Anyone can also ask their favorite LLM a health question and get a succinct answer at any time.
But most AI doesn’t have all the context required to deliver accurate information, only the information a user gives it. In contrast, illness unfolds as a continuous process. That mismatch creates fertile ground for misinformation and increases patient confusion.
Our healthcare system is a labyrinth, tough for even an experienced physician like myself to navigate. My knowledge and medical literacy have been critical to my ALS journey. It’s much harder for individuals without similar backgrounds. That’s why health literacy and patient advocacy must be treated as core components of care.
Patient advocacy in action
Despite suspecting ALS from the start, four doctors failed to properly examine me and delayed a formal diagnosis. One even recommended unnecessary back surgery based on an MRI alone. Advocating for myself became an ongoing responsibility.
In practice, that advocacy required:
- Interrogating recommendations that did not align with the full clinical picture.
- Assembling a coherent medical history from records scattered across institutions, specialists, and portals.
- Translating raw data into decisions, from diet changes aimed at reducing inflammation to interventions addressing severe sleep apnea.
- Revisiting major treatment choices with longitudinal context, rather than acting on isolated test results or single opinions.
My medical training helped me do this more effectively. But the work of gathering, understanding, and applying one’s own health information should not be reserved for those with clinical backgrounds. And, thankfully, it can be supported by modern digital tools.
What changed my experience was the ability to see my health as a continuous story rather than a series of disconnected encounters. Instead of reconstructing my history at every appointment, I now review it alongside my physician. This allows us to weigh real tradeoffs and arrive at better-informed decisions. When I needed back surgery – for real this time – that shared context allowed me to find a surgeon willing to operate on an ALS patient.
I’ve lived for nine years with ALS while navigating a healthcare system that routinely obscured my own medical reality. But I know that pain is only amplified for individuals without medical expertise like mine.
Context and understanding of their condition isn’t something patients should be forced to struggle with on their own. If we help patients become more fluent in their health literacy, we empower them to become better care advocates for themselves.
Image: Syolacan, Getty Images
Dr. Michael Robinson is a retired physician and pharmaceutical executive, a person living with Motor Neuron Disease, and an avid user of the StoryMD platform. He spent 15 years in the pharmaceutical industry, retiring following his ALS diagnosis. Dr. Robinson then became a relentless advocate for the ALS community, serving on several advocacy committees and advisory boards. He focuses on improving clinical trial design, expanding equitable access to new therapies, and recently published a qualitative study of the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale.
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