Everyone is entitled to their own opinion. So why do we care about bias in medical guidelines? Because opinion should not dictate patient care. Think of the prostate cancer patient who sees the surgeon who recommends surgery, the radiologist who recommends radiation treatment, and the internist who recommends watchful waiting. Everyone knows that one’s position depends on where one sits. The surgeon may genuinely prefer surgery and when he recommends it to his patient, the patient realizes that he is, after all, talking with a surgeon and that surgeons are likely to favor surgery. He also knows that he can walk down the street a bit and talk with the radiologist and get his perspective. The point is that even though the patient is given conflicting advice, at the end of the day the decision is his. He chooses among treatment options and the physicians respect his decision. This is called autonomy—a recognition that patients are entitled to make choices among health care options.

Everyone is entitled to their own opinion.  So why do we care about bias in medical guidelines?  Because the opinions of panels should not dictate individualized patient care.  Think of the prostate cancer patient who sees the surgeon who recommends surgery, the radiologist who recommends radiation treatment, and the internist who recommends watchful waiting.  Everyone knows that one’s position depends on where one sits.  The surgeon may genuinely prefer surgery and when he recommends it to his patient, the patient realizes that he is, after all, talking with a surgeon and that surgeons are likely to favor surgery.  He also knows that he can walk down the street a bit and talk with the radiologist and get his perspective.  The point is that even though the patient is given conflicting advice, at the end of the day the decision is his.  He chooses among treatment options and the physicians respect his decision.  This is called autonomy—a recognition that patients are entitled to make choices among health care options.  And, all of these options are included in treatment guidelines for prostate cancer.

It’s not always so easy.  Take breast cancer for instance.  When the lumpectomy first became available, many physicians refused to tell patients that they had the option of having this less invasive and less expensive procedure.  Eventually the situation became so bad that women lobbied to pass legislation in 22 states requiring that physicians inform patients that lumpectomy was a treatment option and permitting patients to make this choice.  This is part of what is called informed consent.  In the United States, we regard it as an invasion of personal liberty when physicians deny patients the right to choose among treatment options.

Today, with the rise of managed care and treatment guidelines, medicine has evolved to the point that expert panel opinions can “dictate” and limit treatment options for patients.  When guidelines recognize that an area of medicine is not yet settled or depends upon patient preferences, they typically provide for treatment options and let the physician and patient choose the most appropriate approach.  It is only when guidelines deny treatment options that they interfere with patient care.  In 2006, when the IDSA began to update its guidelines, patient groups, ILADS, and even IDSA doctors who disagreed with the guidelines sought to have a voice in the process. The IDSA denied these requests for participation out of hand in what appears to be a professional turf war over protecting its role as the “experts” on all matters infectious. 

So it was that rather than acknowledging a diversity of opinion, the Chair of the IDSA Lyme disease panel, Dr. Gary Wormser, hand-picked a panel of like-minded researchers known to have a bias against the diagnosis and treatment of Lyme disease. This panel then selectively ignored evidence of persistent infection or clinical improvement with antibiotic treatment in patients with persistent symptoms of Lyme disease.  For patients, it meant that the fundamental right to choose among treatment options was foreclosed in a set of guidelines that did not acknowledge or permit treatment options, like long term antibiotic care.  For physicians, it meant that to practice medicine using their best clinical judgment could cost them their professional medical license.  The worst part was that physicians and patients who did not know about the controversy would assume that none existed—that there were in fact no treatment options, no controversy, and no choices to be made or alternate opinions to seek.