LYMEPOLICYWONK: Is The IOM Workshop Really an IDSA Workshop in Disguise?
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.
This IOM process is called a “workshop”. Its “product” will be a “committee-authored” summary of the “presentations and discussions”. This summary will “contain only the opinions of those who attended and presented at the workshop”. A workshop summary “does not reflect the views of the IOM”. Ok, well, if the IOM workshop doesn’t represent its views, then whose views does it reflect really? If you answered the views of the committee, you would be correct. So, who is on the committee?
Recall that 4 of the 6 members of the IOM committee are members of the Infectious Diseases Society of America (IDSA), a group that has highly biased views on Lyme disease. There are no patients and no members of ILADS on the committee. Bear in mind too that this IDSA-dominated committee selected the speakers and determined how much time to allot to them. And, then, of course, the committee writes the summary. And, the IOM’s view is that the results do not reflect the views of the IOM. So this is essentially an IDSA conference hosted and sanctioned by the IOM, without accountability by the IOM.
Can’t a panel dominated by the IDSA rise to the occasion anyway? The IDSA does not have a good track record of running processes that are neutral and even handed. (Remember the split vote on the IDSA review panel regarding lab tests that that panel conveniently side-stepped?)Futhermore, if you are trying to ensure neutrality and eliminate bias you realize that you need both sides of a debate determining the process, selecting the speakers, and allocating the time slots. Even if the panel members could write a neutral summary (possible, but how likely?), it could only be a sum of its parts—namely a conference headlined by the IDSA that categorically excludes physicians who belong to ILADS.
To my mind, this is a redo of the IDSA review panel without the protection of the Attorney General to make sure it is balanced in terms of presentation of the science. Only this time it is under the banner of the IOM—which will make people think it represents the views of the IOM. Another rubber-stamp process run by the IDSA without IOM accountability, but with what looks like (but isn’t?) the IOM official seal of approval of the process.
Here is some background information collected from the IOM website for those interested in drilling down.
“Workshop Summary:A workshop summary is a summary of the presentations and discussions at a workshop. A workshop summary contains only the opinions of those who attended and presented at the workshop and does not include consensus findings or recommendations. A workshop summary does not reflect the views of the IOM.”
Here’s why people might think it was neutral: “Forums, Roundtables, and Standing Committees: The forums and roundtables at the IOM bring together leaders in government and industry, scientists and other experts from academia, practitioners, representatives of public interest groups, and consumers. The IOM offers a neutral venue, in which individuals of goodwill from diverse perspectives can gain shared understanding and fresh insights during open dialogue on complex and diverse topics. If a topic matters in an important way to health, sooner or later it will find a place on the agenda of the IOM.
”Here is the description of the product of the workshop: The product to be delivered will be a committee authored meeting summary that highlights workshop presentations and discussions.
You can contact Lorraine Johnson, JD, MBA at firstname.lastname@example.org.