What Gets Measured Gets Managed. What Doesn't Just Doesn't Exist.
Keeping folks from falling through the cracks of our healthcare system
In London’s Underground, the phrase “Mind the Gap” serves as a warning, a reminder that there is a space between where you are and where you need to be, and that if you’re not careful, you can fall through.
In healthcare, that gap is everywhere.
Mind the Gap exists to identify, examine, and explain these gaps. And how patients can keep from falling through them.
What I Mean by the Gap
The gap between bench and bedside. Research often takes decades to reach clinical prime time, but patients don’t have the luxury of waiting. Patients with rare, complex, and poorly understood conditions are left without answers, without treatments, and without allies. Holding stakeholders accountable means asking hard questions about what gets lost, delayed, or distorted between the lab and the clinic.
The gap between what patients experience and what medicine measures. When there is a disconnect between what a patient reports and what a test can detect, medicine has a troubling habit of concluding that the problem lies with the patient. What gets measured gets managed, and what can’t be measured just doesn’t exist. When we don’t have answers, symptoms are psychosomatic, conditions are idiopathic, and the system is downright idiotic.
The gap between research frameworks and biological reality. The tools and frameworks medicine uses to study disease were not built to capture the full complexity of human biology. When a single-day exercise test can't capture a condition defined by delayed physiological deterioration, when a pulse oximeter gives people of color falsely reassuring readings, when a psychological framework is applied to a biological disease, patients suffer.
The gap between research and reality for rare and complex diseases. Millions of people live with conditions that have no approved treatments, no clear diagnostic criteria, and no straightforward path through the healthcare system. Mind the Gap will cover the state of the science, the politics of research funding, and the lived reality of navigating a system that wasn’t built for network medicine. As patient advocate RobynThRedd writes: "Infection-associated chronic conditions isn't an umbrella; it's a rug, and we're all being swept under it."
The gap in how medicine sees minority patients. Medical textbooks have historically featured white skin. Diagnostic tools from pulse oximeters to lung function tests to kidney function equations have been inaccurate for people of color. Clinical trials have underrepresented women and minorities for generations. Black mothers in the United States are three to four times more likely to die from pregnancy-related causes than white mothers, regardless of income or education. Black and brown patients are systematically undertreated for pain. Mind the Gap covers the structural racism embedded in medical knowledge itself.
The gap between how medicine is portrayed in popular culture and the reality. From prestige dramas to viral health content, media shapes what patients believe, expect, and ask about. I’ll pull back the curtain on what popular TV shows and press get wrong about medicine, diagnoses, and the healthcare system.
The gap between what institutions say and what they do. Research programs, funding bodies, and clinical guidelines reflect priorities, politics, and power. The Shirky Principle reminds us that institutions often try to preserve the problem to which they are the solution. Mind the Gap investigates the space between institutional promises and observational realities with particular attention to how those gaps harm the most vulnerable patients.
Who This Is For
Mind the Gap is for patients who have been dismissed and disillusioned by healthcare, clinicians who know the system is broken and want to improve it, and researchers willing to question their own frameworks. This space is for anyone who has ever felt that medicine was speaking a language designed to exclude them.
You deserve to understand the system you are navigating. You deserve to see the gaps clearly. And you deserve to know that falling through them was never your fault.
This is, as always, an important piece for many reasons. There are so many conditions that don't seem to be on the current medical radar, perhaps due to a lack of funding. Telling the patient that their symptoms are psychosomatic is like the Medieval physician saying that God made it that way, so suffer. It stops all discussion on the issue and leaves the patient in limbo. Thanks, Nita, for clarifying some of these issues.
Such an informative piece! I'm glad that through these posts you are bridging the gap between experts and people to help make these conversations more accessible.