Dr Amy Price
At a high impact conference I overheard a touching emotional exchange between a group of doctors. Their care and concern targeted my attention. At first I was warmed by their compassion for their “fallen” mate.. What I heard next rocked my world. As I listened it became clear that these doctors were incapable of assessing risk in their own lives. I worried, how much more would this trickle down into the lives of their vulnerable patients. Here is my story, I wish I could say it was an isolated incidence but it is not.
Fatalism Fueled by Fear is Not Medicine
The doctors gathered protectively as one shared his fear. He had purchased a direct to consumer genetic analysis and the “results” showed he carried a genetic variant that is a risk factor for Alzheimer disease (the APOE gene). He was unaware there were multiple variants of the allele or that he had to have two copies of the offending variant not just the APOE gene to significantly increase his chances of dying with AD. He was past the age for early onset AD, a critical risk factor and had not considered environmental or lifestyle modifies that could reduce his risk and increase his quality of life.
How Realistic are Direct to Consumer Genetics?
The genetics company stated he had an APOE gene with 100% certainty and implied this increased his risk 50%. As they knew no better, he and his friends mixed certainty with percentages and made the fatal assumption that because prevalence or lifetime incidence is increased after 80 he had a 100% “chance” of dying with AD. They stated they were pretty certain but that they really don’t “do” numbers. In reality his chances were likely less than 3%. He had not even begun to show signs of dementia and had a recent normal neuropsychological exam but he had given up everything just waiting for AD to take his life.
This three-minute video from risk bites explains clearly why data without information skills to decode it could bring harm just like it has for this doctor.
Values Without Evidence Can be Deadly
I was a recipient of “values” based medicine without evidence. It was a cruel task master that ate a lifetime of savings while holding out the false promise of a “cure.”
It was worrying the physicians who thought they were giving their best did not know the incidence, prevalence, or false positives for disease. They embraced the concept of treating patients and helping them make “shared decisions” about risk. I heard them dismiss evidence-based medicine with disdain as “those bean counters who eat their own” and “are always reporting problems instead of providing solutions”. These doctors offered their colleague affection, moral support and future financial aid. They lacked what was life saving and could help their friend most. An evidence based strategy with a knowledge of basic risk. Compassion is not enough.
Learning Risk is not Dead Easy
Learning risk is not intuitive for most of us. We need to merge bridges of compassion and understanding with a safe place to learn. I find I still need to refresh my evidence-based skills to use them with confidence but I have tools. I am thankful for my Evidence Based Health Care http://www.cebm.net/education-and-training/dphil/ training at the Center for Evidence Based Medicine http://www.cebm.net/. I am grateful that they identified themselves as evidence-based or I may never have found them.
Join us at Evidence Live 2016
Want to learn more about Evidence Based Health Care? Come to Evidence Live 2016 or take a module about evidence through CEBM at Oxford.
Not ready yet but willing to learn more?
See this excellent article BBC article http://www.bbc.com/news/magazine-28166019 Do Doctors Understand Risk ? Check out the Understanding Uncertainty interactive web site by Sir David Spiegelhalter http://understandinguncertainty.org It is great for examples tutorials and to figure out what to do about your own risk.
Dr Amy Price is a D.Phil Student in Evidence-Based Heath Care at the University of Oxford.