Thoughts on Navigating the US Healthcare System

My wife has a severe and complex case of Crohn’s disease — a chronic autoimmune disease that wreaks havoc on her gastrointestinal tract, diminishes her body’s ability to absorb nutrients from food, and increases her risks of additional diseases down the road, such as colon cancer. She has dealt with this condition for over twenty years, and I’ve been part of her care team for over ten. It’s been a bumpy ride as she’s progressed through every single biologic treatment approved for Crohn’s and experienced at least ten Crohn’s-related hospitalizations.

That’s all a long way of saying that we have gotten a very intimate view of the US healthcare system over the years and have come away with at least a couple lessons worth sharing.

Lessons we've learned

Be your own advocate

First, we’ve learned that it is incredibly important for patients (with their care team) to advocate for themselves. My wife has advocated for MRIs and colonoscopies, for supportive meds during flare-ups, and for treatment changes when efficacy wanes. Our current challenge is to tangle with our insurance company each month regarding her specialty medication prescription. This back-and-forth can be exhausting and, absent my wife’s self-advocating tenacity, would create fiscal and/or physical problems. This need to self-advocate is a reality for Crohn’s disease — it’s a reality for ear infections — and yes, it’s a reality for cancer care.

Meet your doctors where they're at

The ubiquitous sentiment of “meeting people where they are” is a two-way street in healthcare. Physicians can do this by tending to the physical and emotional needs of patients. Patients can do this by tending to the intense time pressure on physicians — using data, clear examples, and thoughtful preparation to communicate clearly and to make the most of the physician’s time. Over the past two decades, for example, my wife has learned that diligent note taking about medications, nutrition, symptoms, and side effects allows her to communicate concisely, effectively and to have a voice in her own care. That said, even with two decades of practice, we can still get caught off guard. Last week a new general practitioner asked my wife how she had responded to routine B12 infusions five years ago. If my wife had had records going back that far — data, diary, etc — she could have met the physician where she was with an insight that would help crystallize her thinking. Without that, my wife had to rely on her memory which, in regards to those B12 infusions, was quite hazy.

How we apply these lessons at Navio

At Navio, we understand that a cancer diagnosis lands suddenly, care plans evolve quickly, and that patients don’t have two decades to gradually develop useful habits. As a result, we help cancer patients navigate the realities of the healthcare system. Navio's patient app helps patients stay on track with their plan and capture their real world experience between doctor visits: Did I forget to take any pills? What adverse reactions did I experience in the past [X] weeks? When did those symptoms peak? How has my mental state ebbed and flowed? These captured insights enrich medical records and give oncology care teams the comprehensive insights necessary to manage patient care. They also give patients solid footing on which to advocate for themselves and become an active and engaged partner in their own care plan.