A terrific article by Jerome Groopman, “Health Care: Who Knows Best”, appeared in the New York Times about the healthcare bills. Groopman’s article discusses how healthcare should be implemented in terms of guidelines and notes that there are two choices. The first is through mandates. The second is through “nudging” consumers in the right direction, but leaving the final choice to the consumer. (This approach is advocated by the author of the book Nudge, who is an advisor to Obama.) If this sounds like the Lyme debate, you are catching the drift. As we know, the distinction between mandatory guidelines that do not permit physicians and patients to make choices and guidelines that permit individuals to make their own choices, even if they are unpopular, can determine whether a patient has the opportunity to get well. The question boils down to this: Do the experts know best or do some decisions simply belong to the patient and the treating physician?

First, do the experts really know what’s best?  Groopman explains the fallacies of mandating best practices: “Over the past decade. . . experts . . .have repeatedly identified “best practices,” only to have them shown to be ineffective or even deleterious.”  He points as examples to best practices in the areas of blood sugar levels in intensive care, knee and hip replacement, control of asthma, diabetes, hypertension, and pneumonia.  Groopman goes on to identify factors that doom “best practices” guidelines: 1) failure to separate those practices that can be standardized (like safety) from those that require individualized care, 2)”overconfidence bias, the tendency of experts to overestimate their ability to “analyze information, make accurate estimates, and project outcomes,” 3) “confirmation bias,” the tendency of experts to “discount contradictory data”, and 4) the fact that clinical trials yield averages that don’t reflect clinical reality of patients with multiple medical conditions or at varying stages of disease progression.

Second, do decisions between treatment choices belong to the patient?  Take the mammogram controversy. The recent change in those guidelines caused an uproar.  One argument in favor of increasing the age limit for mammograms was to “spare [women the] anxiety, distress, and unnecessary biopsies”. NPR commentator Block hit the nail on the head when she identified this as “a very patronizing approach to take toward women’s health…. Women may very well be willing to assume those harms if it means that they may be diagnosed earlier.”  Thaler, coauthor of Nudge, analyzed the mammography controversy in The New York Times and concluded that “one can make a good case that we don’t want the government making these choices” for us.  That is essentially what the Lyme community has been saying to the IDSA for years.

For the full article, click here.

You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.