LYMEPOLICYWONK.ORG: When it’s a matter of opinion, whose opinion counts?

Lyme patients take a lot of heat, frankly too much heat. Sometimes reporters make errors, don’t have enough facts, and aren’t fully informed. And that is rough. But it is even rougher when reporters are informed and given the correct information and then ignore half of it. So what do you do? Well, CALDA has written the Chicago Tribune protesting the highly biased reporting in its December 8, 2010 article on Lyme disease. We have asked them to publish an Op Ed piece by CALDA. We believe that reporters have an ethical obligation to report on stories in a balanced manner. They also owe it to patients to set out both sides of a scientific debate. To do otherwise, puts the lives and health of thousands of sick people in danger. What do you think? If you are interested in supporting this effort, please write the Tribune (emails below). Ask them to publish an Op-Ed by CALDA to set the record straight. A tip of the hat to Ellen and the NYC Lyme Activism group for their wonderful work on this project. More information after the jump. . .

I’ve been getting a lot of email lately about the IDSA. Most of it is about the voting issues, but some of it is about other things they have done to “game the system”. Here’s a list of the top 10 questions patient ask me about the IDSA that begin with the word “why”? As Mark Twain says, “few things are harder to put up with than the annoyance of a good example”—or in this case, ten good examples of why the Lyme community should question the advice to “trust us, we’re the experts” when it comes to the IDSA. Let me know if you think there are any “whys” I left off the list.

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.

This is a chart of the relative importance of different stakeholders to big Pharma. (Click chart to enlarge.)
I was really struck by how little weight patients were given (9%) compared to specialists (47%) and compared to key opinion leaders (21%).
So if you take specialists and add key opinion leaders to that, 68% of drug companies thought that key opinion leader who are specialists would have the
most influence on their company over the next 2 years. Wow! And, look at the lowly role of the general practitioner

Yesterday, I was honored to speak at the US Department of Health and Human Services’…