Doing a guideline review process correctly and vigilantly is important. It is also a difficult goal to pull off. The 2006 IDSA guideline development process was flawed, as Connecticut Attorney General Richard Blumenthal found in the antitrust investigation. That panel was hand-picked to represent a particular viewpoint on treating Lyme disease and it cherry- picked the evidence or interpreting the evidence in a manner that supported a preconceived viewpoint. When science is unclear or unfolding rather than acknowledging that fact, guidelines sometimes rely on 'expert opinion' to fill the evidence gaps. This is a big problem because evidence based guidelines are presumed to be based on evidence, not opinion. Substituting the 'expert opinion' of someone on a guideline panel is no better, (actually, it is worse) than leaving the matter open and allowing the treating physician to use their own expert opinion.

I say it is worse to substitute the expert opinion of a panel for that of the treating physician because in the land of the blind, the physician is the one-eyed king.  Only the treating physician knows the patients medical history, severity of illness, course of treatment, and progression of the disease—key factors in selecting treatment approach.  Only the treating physician can talk to the patient and discuss patient preferences. Until science is settled patients deserve guidelines that do not etch a particular viewpoint in stone. Let’s say there are three opinions, those of a remote panel, those of the treating physician, and those of the patient.  Whose opinion should count?  The treating physician, who has more relevant information about the patient, and the patients, who bears the consequences of treatment options,should trump a remote guidelines panel when science is uncertain.

You may contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org