You can download the rubric here. You can also view videos, including one of yours truly, explaining why patient involvement in research matters.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Executive Director of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org. On Twitter, follow me @lymepolicywonk.
In response to concerns raised by patient's organizations and physicians about the document submission process–which initially tried to limit submissions to five pages–the IDSA has changed its document submission process. The IDSA is now requesting that submissions be 10 pages or less with an acknowledgment that they will consider all submissions regardless of length. For a submission to be considered by the panel though it must specify what recommendation is being contested. This is because the scope of this panel is simply to consider and weigh the scientific evidence for contested recommendations.
The cost of an illness includes medical and non-medical costs. Insurers bear the burden of medical costs for covered care, while society bears the cost of non-medical burdens. Saving a buck from insurance costs, only to spend 4 bucks on non-medical costs helps insurers at the expense of society. It really shifts the burden of an illness from the insurer to society. A recent article by Dr. Cameron makes this relationship in Lyme disease clear. The article "Proof that Chronic Lyme Disease Exists" was published as an open access article (meaning you can read it and download it without cost). He has done a thoughtful job pulling together statistics from a number of different studies to demonstrate the high rate of persistence of arthritis, neurocognitive impairment, neuropathy, skeletal pain and fatigue for years after treatment in patients diagnosed with Lyme disease. For instance, the rate of persistence of symptoms in patients after short term treatment for Lyme disease was 34% in Massachusetts.
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.
On December 3, I gave oral comments to the federal Tick-borne Disease Working Group. I…
I have gotten some thoughtful comments on my blog posts about the Institute of Medicine’s upcoming Lyme “state of the science” workshop. I want to share my thoughts about why CALDA pulled out of the process and why we will stay out unless there is dramatic change in the program. Whether it is best for groups to participate in a process even though it is biased is always a judgment call that depends on how biased the process is—in short whether you do more harm than good by staying in. CALDA pulled out because we represent Lyme patients and do not believe that we should legitimize a highly biased process by participating in it. We do not believe this is in the best interests of patients. Let me break this down a bit in terms of what is happening at the IOM workshop to explain why I believe it is highly biased.
Dr. Stricker and I have published a new peer-reviewed article on the flawed IDSA Lyme guidelines development process, the antitrust investigation, and the lack of impartiality in the mandated review process run by the IDSA. The article is now the number 1 accessed article of the publisher with over 1600 hits in the week since it was published. (Johnson L, Stricker R. “The Infectious Diseases Society of America Lyme guidelines: A cautionary tale about development of clinical practice guidelines,” Philosophy, Ethics, and Humanities in Medicine;5:9 2010.) The article is open access. The two lead in quotes set the stage. The first is by one of the nation’s founding fathers, Thomas Jefferson: ‘Without health, there is no happiness’. The second quote is by Thucydides and speaks to power and its abuse. ‘The strong do what they can; the weak endure what they must’. An excerpt of the article follows the jump:
