Through the Cracks

Often, when systems are automated, adapted to great scale, one necessary trade-off for the efficiency gained is a gross oversimplification of the information being captured. Email is archivable, searchable, easily stored in less than 10kb of memory and easily transmitted to any number of recipients. The downside of this miraculously efficient representation of a human letter is that it lacks all of the nuance that can't be represented with ASCII symbols. Handwriting, sketches, personal stylistic choices of layout that once characterized the written exchange are lost. Similarly, the healthcare industry has oversimplified human health in way that leaves unacceptable gaps.

For most people, whether the healthcare industry works poorly or miraculously, at least it works. A patient with diagnosed cancer may or may not receive coverage for their life-saving treatment. But in the event that he does not, it is because his insurance company made a profit-maximizing decision to kill him, not because he was never able to apply for his treatment.

Most people have one of several thousand common and recognized diseases. Further, most of those people have a very common presentation of their common disease and are able to receive a diagnosis both accurate and specific. This diagnosis can easily be stored in computer systems as an integer and can be referenced when approving treatments, considering eligibility for disability benefits, etc. However, many people are left precariously without any such category. These are the rare but real individuals whose diseases don't fall neatly into any diagnostic criteria but whose symptoms, in contrast, can be frighteningly concrete.

One large category of such people are those with undifferentiated autoimmune diseases. Diseases like systemic lupus erythematosus (SLE) and psoriasis are not binary quantities like strep throat or HIV. They exist along a wide continuous spectrum of overlapping diseases and are defined by a somewhat arbitrarily agreed upon said of criteria set by the American College of Rheumatology. As a result, some patients might meet the criteria for lupus, psoriasis, rheumatoid arthritis and vasculitis, while another patient might experience several debilitating symptoms but not have enough in any one category to satisfy the criteria for a specific diagnosis.

Another notable group of patients are those whose symptoms completely baffle physicians. They either lack a diagnosis or are slapped with a new one each time they visit a new doctor. However, our modern society expects them to be able to label themselves and is unlikely to consider them for the benefits of our social safety net in the absence of specific diagnosis. As technology is further integrated with our way of doing things, we should pay careful attention to what we are chopping off while sectioning our lives into blocks of information small enough to fit in one column of a SQL database.