My friend Matt sent me an interesting article from lymedisease.org, written by its CEO, Lorraine Johnson, JD, MBA. You can find it at
Many Lyme patients believe that diagnostic guidelines have been corrupted by industry conflicts (diagnostic tests, vaccines, and insurance) and researcher self-interest. This occurs elsewhere in healthcare, too, which is why there’s a growing interest in “evidence-based medicine,” or EBM. Makes sense, after all. Every sane person would favor a medical style based on research that promises, as its proponents state, to integrate the “…best research evidence with clinical expertise and patient values.”
Trouble is, though, that patient values are frequently overlooked despite any lip-service to the contrary. This happens not from malign intent, but because patient experience is necessarily subjective, so not amenable to scientific measurement.
Lorraine Johnson writes, “…we need to know how patient values are taken into account. Are patients involved? Whose values and viewpoints are represented?” She mentions that this concern is shared by the Institute of Medicine, along with newly emerging organizations established under healthcare reform, like the Patient Centered Research Outcomes Institute (PCORI), with its budget of $350 million.
So please, when we hear the term “evidence-based,” let’s ask if the evidence includes the person who happens to be sick.