What rare disease care can learn from endurance athletics
Endurance coaching adapts to an athlete’s changing physiology rather than forcing the body to follow a static plan. Rare disease care can apply the same principle through adaptive care that responds to changing health, circumstances, goals and what matters most in a patient’s daily life.
Most of my career has been spent on the strategy side of healthcare, thinking about how care is designed and how patients actually experience it. When I joined an Atlantis Health panel earlier this month, “Ending the Rare Disease Odyssey: Inspiration for New Approaches to Patient Engagement and Support,” I expected to contribute the patient and caregiver perspective I had been invited to bring. I left turning over an idea I had not planned to raise: rare disease care may have something to learn from endurance athletics.
At first glance, the comparison seems absurd. Endurance sport is about maximizing performance, while rare disease care is about helping people live with chronic illness. Yet both require people to read a physiology that can change from day to day and make decisions under uncertainty. Experienced endurance coaching adapts the plan to the body rather than forcing the body to conform to the plan, and that same principle has relevance in healthcare.
I think of that idea as adaptive care: continuous personalization as a person’s physiology, circumstances and goals change. Selecting the right treatment, however precisely, is only the beginning, because patients do not stop changing once a prescription is written.
When the plan is not the goal
That conviction did not come from theory. I have lived with chronic disease for as long as I can remember: asthma and eczema, both common conditions, and alopecia universalis, a far rarer one that arrived with puberty. Long before I had language such as patient engagement, I understood something simpler: my body played by different rules, and living fully would mean learning those rules rather than pretending they did not exist.
Athletics was where I first learned what that meant. I became a competitive swimmer not because I loved it, but because I was told the humidity was “good for asthma,” and for years I loathed it, feeling less that I had answered a passion than that I had been handed a prescription. Somewhere in high school, that changed. I realized I could keep wishing my circumstances were different, or I could ask a more useful question: how good could this become?
It was the first time I consciously exercised agency, which I think of as the ability to act on intention. Agency does not mean the absence of constraint; it means retaining the capacity to pursue what matters despite the constraints that remain.
Eventually I left the pool for triathlon and, in time, Ironman, where I learned not to train harder but to think differently about performance. Every athlete had a training plan, but no experienced coach mistook the plan for the goal. The plan was a hypothesis that offered structure while physiology kept the final say.
A workout might call for threshold intervals on paper while that day’s body, shaped by poor sleep, stress or a gathering infection, told a different story. The athletes who performed most consistently were not necessarily those who could tolerate the most suffering; they were often those who had become unusually attentive observers of their own physiology and adjusted before small problems became larger ones.
That is where the analogy to rare disease becomes useful. Rare and chronic are not synonymous, but when they overlap, the evidence base is often narrower, variability can be greater and a standardized plan may explain less of what happens between visits. The plan still matters, but it cannot be more important than the person following it.
What happens between appointments matters
That philosophy became personal again years later, when treatment for my skin disease altered my health baseline. After prolonged topical corticosteroid exposure, I experienced symptoms that were ultimately understood as topical steroid withdrawal, or TSW, a condition that remains clinically debated and incompletely defined. A recent evidence review found a growing but still limited research base, while newer mechanistic work has begun to explore possible pathways involving mitochondrial metabolism.
For me, the practical consequence was not academic. My definition of performance changed almost overnight: instead of training for an Ironman, I was working to recover the capacity to think clearly, do my work and move through an ordinary day. The finish line had moved, but the discipline of adaptation had not.
That experience also changed how I think about signals such as heart rate variability. A sustained change in HRV can raise a useful question about recovery or physiological stress, but it is not a diagnosis, and interpretation depends heavily on the device, the individual baseline and the surrounding context. Recent reviews of wearable-derived HRV reach the same basic conclusion: the signal can be informative, but its clinical utility remains limited by variable protocols and incomplete validation.
As an athlete, I used HRV as one input when deciding whether a day called for effort or recovery. As a patient, I use it more modestly—as one piece of information that can help me notice when my body is departing from its own baseline and decide how carefully to spend the energy I have. The value is not the number itself; it is the practice of observing, contextualizing and adapting rather than assuming yesterday’s plan must still be right today.
From precision medicine to adaptive care
Everyone living with a rare disease has some version of a treatment plan, just as every athlete has a training plan. Both should be grounded in evidence, and neither should be treated casually. But neither can fully anticipate a dynamic physiology, changing life circumstances or the practical burden of living with an illness outside the clinic.
That is why the spaces between appointments deserve more attention. Wearables, patient-reported outcomes and remote monitoring can help make those spaces more visible, especially in rare disease populations where traditional data are often sparse. A recent systematic review of digital health technologies in rare disease trials found growing use of remote monitoring, patient-reported data and long-term care tools, although the evidence remains uneven across conditions and technologies.
The opportunity is not simply to collect more data. More data without interpretation can become another burden for patients, caregivers and clinicians. The useful question is whether the information helps the care team recognize meaningful change, understand what matters to the patient and adapt treatment, support or timing in a way that improves daily life.
Precision medicine asks, “What is the right treatment?” Adaptive care asks a different follow-up question: “How do we keep adjusting everything around that treatment as a person’s physiology, goals and life continue to change?” Elite coaching has been answering a version of that question for decades, not by abandoning the training plan but by treating the athlete’s response to it as equally important information.
Measure the life, not only the disease
The performance being optimized is different, of course. Athletes may measure success in finish times and podiums; someone with a rare disease may measure it in whether they can keep working, care for the people they love, think clearly enough to participate in a meeting or have enough energy left for the parts of life that make treatment worth enduring. Those are not soft outcomes simply because they are personal.
Rare disease researchers have been making a similar case for years. Work on patient-centered outcomes argues that measures should reflect the daily experiences, preferences and values that matter to patients, not only the clinical variables easiest for a system to collect. That principle belongs in care delivery as much as it belongs in research.
Agency is the outcome I keep returning to: the capacity to act on intention despite constraint. That does not replace symptom control, survival, functional measures or other clinical outcomes; it gives them a human context. A treatment that improves a laboratory value but leaves a person unable to participate in the life that matters to them has produced an incomplete version of success.
Caregivers belong in that adaptive model as well. They often detect subtle changes before the next scheduled visit, and their own capacity can determine whether a treatment plan is sustainable at home. A system designed around the patient cannot treat the caregiver’s observations, limits and goals as incidental.
The plan should keep learning
Adaptive care is ultimately the extension of a single question—the one I first asked in a swimming pool and have asked throughout my career since: given these constraints, how good can this become? Applied to healthcare, that question asks systems to become more responsive to the person, adjusting not only the treatment but also the support, monitoring, communication and timing around it.
Breakthrough therapies, earlier diagnosis and precision medicine will continue to shape rare disease care. Their full value, however, will depend on systems capable of learning alongside the people they serve, using clinical evidence without mistaking a static plan for a static patient.
The highest aspiration of healthcare is not simply improving clinical outcomes in isolation. It is helping people preserve enough health, function and agency to keep living lives that are recognizably their own. To me, that is the outcome worth optimizing.
Erica Olenski, BCPA, CPXP, eFACHDM, is a healthcare strategist and founder of Monarch Futures, where she advises healthcare organizations on human-centered innovation, strategy and lived-experience-informed design.