Post 3 — N=1 Is Not a Reason to Ignore Someone

 When Complexity Meets the Standardized Box

An educational series about individualized care, medical complexity, system design, and the human life at the center.

Post 3 — N=1 Is Not a Reason to Ignore Someone

ASSESSMENT · RESEARCH · OUTLIERS

What happens when someone’s medical reality is too unusual for the available categories?

In research, N=1 refers to a single observation or individual.

My son Alex is an example of why studying an individual carefully can be enormously informative.

He sustained an exceptionally complex combination of injuries involving the brainstem, cervicomedullary junction, and upper cervical spinal cord.

He has profound physical dependence, intact cognition, unusual autonomic responses, and a respiratory system supported primarily through diaphragm pacing.

Yet Alex has remained remarkably stable at home for more than two decades.

That stability didn’t happen because his needs were simple.

It happened through observation, clinical collaboration, learning, adaptation, prevention, and extraordinary consistency.

Now consider what happens when a standardized assessment attempts to categorize someone like Alex.

His inability to physically execute tasks may be mistaken for a broader inability to direct them.

His low historical use of paid services may be interpreted without recognizing the enormous amount of care supplied by family.

His relatively low frequency of medical crises may fail to reflect the continuous effort required to prevent them.

And an inaccurate checkbox can become part of an administrative record until someone identifies and corrects it.

Each piece of information may appear straightforward.

But together, they can create a profoundly incomplete picture.

A standardized assessment is a tool for understanding people. People are not required to become simpler so the tool can understand them.

When the tool encounters someone who does not fit, that is not necessarily a failure of the individual.

It may be an opportunity to improve the tool.

And perhaps the most important question is:

What does the assessment fail to see?

#Nof1 #RareConditions #DisabilityAssessment #PersonCenteredCare #EvidenceBasedCare #BeyondTheCheckbox #HCBS