LYMEPOLICYWONK: Groopman: Who Knows Best—a Lesson for Lyme

Byldoadmin

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.

Similar Posts

  • LYME POLICY WONK: CALDA survey results are in!

    Ask the Lyme community a question, or two or 30 and they answer! When we asked for input before the IDSA Lyme hearing, we had 3,600 completed surveys within 2 months—that’s astounding! I want to thank everyone who participated. The survey results provide very important information for the Lyme community and will be useful to describe the extent of the problem that patients have being timely diagnosed, treated, reimbursed, seriously ill and the devastating effect the guidelines have on patients health.

  • LYMEPOLICYWONK: Artful Dodgers, 1,2,3 : the IDSA, the NIH and the IOM Makes Three

    What do Representatives Chris Smith and Frank Wolf have in common? They know how to ask the right people hard questions. What do the IDSA, the NIH, and the IOM have in common? They’ve honed the skill of the artful dodger. Representatives Smith and Wolf want to know why the NIH “stepped back” from its charge to run a state of the science conference and handed that hot potato to the IOM. One big difference between the NIH process and the IOM process? The NIH process considers bias a conflict of interest, meaning IDSA folks wouldn’t be sitting on an NIH panel. But, drum roll. . .the IOM permits panels to be biased and coincidentally has a panel that consists almost exclusively of IDSA folks, 4 of 6 panel members. Oh, and one more thing, the IOM is not technically considered to actually be ‘the government’. This is a picture perfect example of plausible deniability. The NIH didn’t stack a panel. The IOM did with IDSA folks. But, hey, they like bias and they are not accountable, are they? A copy of the letter from Representatives Smith and Wolf to Dr. Francis Collins of the NIH together with Collins response can be downloaded at the bottom of this blog post.

  • |

    LYMEPOLICYWONK: Dr. Fallon Sets the Record Straight—Part 1. Size Matters.

    Dr. Fallon, director of the Columbia Lyme Center, and colleagues have recently published an open access article (I’ll post the link below): “A reappraisal of the U.S. Clinical Trials of Post-Treatment Lyme Disease Syndrome.” The article reviews the findings of the four clinical trials and accurately lays out the state of the science in chronic Lyme research. This is important because future research needs and policy decisions are determined by the state of the science.

  • LYMEPOLICYWONK: New Lyme Disease Culture Test Could be Game Changer

    Advanced Laboratory Services Inc. (ALSI) has announced a new culture test for Lyme disease. It is commercially available in all states except California, New York and Florida, which have individual state licensing requirements that must be met before the test can be offered. Direct detection of bacteria through culture is considered the “gold standard” for diagnosis, but this method has not been commercially available for Lyme disease using previous culture methods. The new test is based on research conducted by Dr. Eva Sapi and colleagues, which CALDA helped fund. Results of the research published earlier this year demonstrated the improved culture method for Borrelia burgdorferi, the agent of Lyme disease, and the technique has recently been corroborated using human blood samples. Larger confirmatory studies of the test are now being pursued. Dr. Joseph Burrascano, a pioneer in the treatment of Lyme disease, consulted with ALSI to help make the test commercially available. A sensitive high-quality culture test would not only permit patients to be accurately diagnosed, but would lay to rest much of the controversy surrounding Lyme disease.

  • LYMEPOLICYWONK: Yes, Patients Need a Role in Setting Research Agendas!

    Some of you know that I am honored to be a patient representative for the PCORI patient engagement panel. PCORI stands for Patient Centered Outcomes Research Institute, an agency created by Congress that funds $500 million dollars of research a year.) What is unique about PCORI is that it funds research that is “patient centered”—research that puts patients at the center of the process. Today, PCORI has released the standards for measuring whether research is truly patient centered. These include involving patients in determining the research questions and the characteristics of study participants, monitoring the conduct of the research, participating in study recruitment and data collection, and the dissemination of study results. The standard calls for reciprocal relationships where researchers and patients learn from each other. It also calls for patient/researcher partnerships and an environment of trust, transparency and honesty. Now, doesn’t that sound like something that Lyme patients need?