For years, I spoke about the importance of coordinated care. Long before the term became fashionable, I helped build what would later become known as a medical home at Minot Air Force Base. The concept was straightforward. Somebody had to own the whole patient. Not just a diagnosis. Not just a specialty. Not just a laboratory value. The whole patient.
At the time, it seemed obvious. It still does. What surprises me is how often I now find myself serving as my own care coordinator.
I have good doctors. A skilled endocrinology physician assistant keeps me supplied with Mounjaro and helped solve an injection-site reaction problem. Together, we discovered that a little hydrocortisone cream and topical diphenhydramine applied before and after injections largely eliminated the redness and irritation. It was practical medicine at its best, two people working together to solve a problem.
I have a rheumatologist who carefully monitors my methotrexate, which keeps my rheumatoid arthritis symptoms under reasonable control. I have a cardiologist who follows my cardiac status. I have a surgeon preparing for an upcoming procedure. Most recently, I transitioned from receiving primary care through an advanced practice provider to a board-certified internal medicine physician who has impressed me with her thoroughness and clinical judgment.
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These are not bad clinicians. They are good clinicians. The problem is that they rarely talk to each other. The only time everyone seems to suddenly discover one another’s existence is when a surgical clearance is required.
Recently, I found myself arranging a new EKG because my previous tracing, performed in January, was considered too old for the surgical process. Never mind that I had already undergone a stress test and echocardiogram earlier in the year. The surgery itself had been approved. What remained was ensuring that the proper documentation moved through the proper channels so that somebody could issue the final clearance.
As I worked through the process, I realized something uncomfortable. I was functioning as my own medical home. I was carrying information from one office to another. I was tracking laboratory values. I was reconciling medication changes. I was making sure one specialist knew what another specialist was doing. I was connecting the dots.
In other words, I had become the care coordinator.
Perhaps the most interesting part of this experience is the role of primary care. I now have a board-certified internist whose training is specifically focused on understanding the entire patient. Yet when surgical clearance became necessary, nobody called her. The requests went directly to cardiology. That is not criticism. It is simply observation.
Modern medicine has become increasingly specialized. We have experts for the heart, joints, hormones, kidneys, lungs, and virtually every organ system imaginable. The expertise is extraordinary and often lifesaving. But every gain comes with a tradeoff. As specialists become increasingly focused on individual systems, fewer people are responsible for integrating the whole picture.
Looking at my own medication list drives the point home. Hypertension, diabetes, rheumatoid arthritis, thyroid disease, cardiac disease, asthma, anxiety, insomnia, hyperlipidemia, chronic pain, and the ordinary effects of aging all converge within a single individual. No physician treats “a medication list.” Each physician treats a portion of me.
The cardiologist sees one piece. The rheumatologist sees another. The endocrinologist sees another. The surgeon sees yet another. Someone still needs to understand how all those pieces fit together. Too often, that someone is the patient.
The irony is not lost on me. After spending years promoting the medical home concept, I now find myself navigating many of the same challenges faced by millions of patients and families. The difference is that I have an advantage. I understand the language. I understand the medications. I understand why my rheumatologist wants me to hold a dose of methotrexate before repeating liver function tests. I understand why my endocrinology provider is fighting a formulary battle for testosterone replacement. I understand why the cardiologist’s office is reviewing yet another EKG.
Many patients do not have that advantage. They face the same fragmented system without medical training. That reality has only strengthened my belief in a lesson I learned decades ago.
Good specialists are important. Good primary care is important. Good hospitals are important. But patients also need coordination. Somebody has to own the entire story.
The lesson from my recent experiences is not that my physicians have failed. They have not. In fact, I would gladly trust any of them with their respective areas of expertise.
The lesson is that even excellent clinicians working in parallel do not necessarily create coordinated care. A system can be filled with competent professionals and still leave patients responsible for connecting the dots. That was true when I first began building medical homes. It remains true today.
And perhaps the greatest irony of all is that after helping create a model intended to solve this problem, I often find myself serving as my own medical home.
Ronald L. Lindsay is a retired developmental-behavioral pediatrician whose career spanned military medicine, academic leadership, and national advocacy for dignity-centered neurodevelopmental care. His NIH-funded work with the RUPP Autism Network helped define evidence-based approaches to autism and related developmental disorders.
He directed the LEND Program at The Ohio State University and founded JBLM CARES, a $10 million autism resource center for military families. His writing spans clinical scholarship and long-form fiction. He is the author of The Mercy Directive and the six-novel Cassandra series, a completed political and medical fiction saga tracing the rise of the Cassandra system from its origins to its national and international legacy. His forthcoming memoir, The Quiet Architect, examines how conscience and structure collide in modern medicine.
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