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Dr. David Resnik at the University of Wyoming is a plainspoken public health care policy ethicist. When he describes the obligation that governments and others with positions of authority in health care have when communicating with the public, he may sound a bit like your mother. It is "to tell the truth, the whole truth and nothing but the truth". The obligation is to tell the public the information that they need to be able to make individual choices. This includes not exaggerating or preying upon fear to manipulate people-even if you do so with good intention. A recent case study, anecdote if you will, violates each of these tenets, one by one. . . More after the jump.

CALDA has just sent a letter to National Institute of Allergy and Infectious Diseases (NIAID) asking them to pull the plug on an experiment that threatens to harm Lyme patients. The study involves allowing live tick larvae to feed on patients. It is impossible to ensure that ticks are truly sterile and do not carry unidentified pathogens. In addition, tick saliva as well as Borrelia burgdorferi suppress the immune system of patients. Both factors place patients who enroll in the study at risk. Because of this, we feel the study is unethical and could harm patients. Keep reading for details. . .

During 2010, Dr. Stricker and I published nine articles or letters on Lyme disease. Shortly after the New Year, another publication by us came out. This post lists these 10 publications and tells you how to access those that are available without charge. More after the jump. . .

A recent study evaluated over 4,200 IDSA guideline recommendations and concluded that more than half—really?—more than HALF? were based on no more than expert opinion and anecdote, not evidence. As it turns out, only 1 of 7 treatment recommendations were based on high quality research trials. According to a recent article in Reuters, in the absence of a strong evidence base “the recommendations end up depending largely on who's on the guideline-drafting panel and any assumptions or opinions they may bring to the process.” The IDSA likes to paint patients who oppose its Lyme guidelines as “anti-science” misfits, but the truth is that patients just want some honesty and transparency. We’d like a little more evidence and a lot less opinion. We’d like more treatment options when the evidence is poor. Evidence based medicine is supposed to be about wringing the bias out of the process, but expert opinion is all about bias. One doctor who served on many IDSA panels acknowledged that “we are operating on a lot of bias. We recognize we have bias, but it’s impossible to eliminate when there is a dearth of data.” Well, this is clearly wrong. It is easy to acknowledge the lack of evidence and provide treatment options. Just like the prostrate guidelines do. More after the jump. .. .

Here’s an interesting approach to conflicts of interests offered by one of the fathers of evidence based medicine, Dr. Gordon Guyatt. The topic was guideline development and the interests of those serving on a guideline panel in having their pet theories and research promoted in the guidelines. Why is this important to researchers? It helps further the academic careers of researchers when their work is cited, referred to and used as the foundation for creating treatment guidelines. There is a dynamic tension between the use of expertise and the potential bias expertise may bring to the table. Those of us in the Lyme community are only too familiar with the fact that the IDSA guidelines were developed by academic researchers and that references to their own research dominate the guidelines. Being tied to a theory that your research has advanced creates a bias towards reinforcing that theory in the selection of evidence cited, the evaluation of that evidence, and the development of guideline recommendations that confirm that bias. Guyatt’s perspective is novel and interesting. In his mind the way to manage this bias is not to exclude the researchers from sitting on the guideline panel but to limit their ability to misuse their power to further their own ends. Hence, those with what he called a primary conflict of interest are precluded from chairing a guideline panel, drafting recommendations and voting on them and even the ranking of evidence. Read how he defines an intellectual conflict of interest and how he would restrict participation in guideline development by those with intellectual bias.