outliers and the 'practice' of medicine

As a cell biologist one of the biggest challenges I face is biological variability (def - apt or liable to vary; deviating from the usual type).  In trying to define a characteristic, biological variability forces us to use the mean; we can describe the average or mean characteristic but never encapsulate all possible variations of that characteristic into one value. I have come to love biological variability; that point at which you think you have something sussed and you try an experiment one more time and get a different answer forcing you to think further and delve deeper for an explanation - biological variability creates the complexity of life.  Yet, I have seen biological variability confound scientists who work within the boundaries of defined laws and outcomes and so it seems, in my experience, that biological variability also confounds medicine.

Medicine, I have found, tends to practice on the basis of the absolute mean and doesn't cope well with variability - outliers confuse the practice of medicine and little consideration is given to the case that people and their symptoms don't always fit into the constraints of the mean. 

Take for example my cancer - ovarian clear-cell carcinoma - it doesn't produce the standard ovarian cancer marker, CA125; making it easy for clear-cell to slip under the radar unnoticed and go about it's devastating work silently and unseen.  Ovarian clear-cell carcinoma is an outlier - only a small percentage (less than 7) of ovarian cancers are clear-cell;  so it is not an 'average' cancer and it does not sit at the forefront of the mind of the medical practitioner it presents itself to.  

In working to the constraints of the mean misdiagnosis can occur, so it was with much empathy that I read this post by Kate Davies on the misdiagnosis of her stroke.  Kate's words led me to think of my own diagnosis and the path that led me to where I am now.  Especially, to the letter from the registrar telling me that my blood test results were normal and, a year and a half of pain and concerning symptoms later, to the late night phone call telling me that abnormal cells had been found and did I understand the implications of this?

By focusing on the mean, medicine becomes deaf to those who present outside the mean, by focusing on the mean medical practitioners fall into the trap of diagnosis by assumptions.

As an outlier the need for medical practitioners to learn to listen, not just to the verbal communication but more especially the non-verbal communication of their patients seems ever more urgent.  I have learnt the words to say, the red flags that mean I can advocate for myself and create the inertia to get things moving.  But it has taken time and learning to get to that point, time that maybe I don't have to loose, to get a medical practitioner to listen to me to consider that my cancer and I are outliers; that together my cancer and I make up the complexity and wonder of life.

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