LYMEPOLICYWONK: And, the Number Is? 5,200 Responses! IDSA Guidelines and Patient Preference Survey
Let me thank everyone who responded to the Patient Preferences Survey! We have drawn over 5,200 responses, which is just simply fabulous. We will now start the process of reviewing the responses with an eye toward publication of the results. Our last survey was published in Health Policy, a widely respected peer reviewed journal. Those results now help inform the base of knowledge of the access to care problems that Lyme patients face. Our goal with these surveys is to open the space for conversations in the public health arena about what is really going on with Lyme patients from their perspective. We are trying to give voice to the patient community, which is all to often completely ignored in conversations about Lyme disease. Your willingness to participate in these surveys allows us to do that. So hats off to you for being so vocal and letting us know your views.
Maybe I'm just being ignorant, but I can't see this convincing anyone outside the Lymeworld. They'll look at it like we conducted a survey of people who thought they were Napoleon, and came up with the results of yes most are Napoleon.
John–Thanks for the comment. You raise a good point. These surveys try to gather information. They aren't designed to win arguments or convince the inconvincible.
All of the research that is being done on chronic Lyme patients is being done on very small sample sizes (75 max in the treatment arm) using patients who are not like those seen in the community. Our goal is to tell the real story with real data from patients who have chronic Lyme disease. We do that through broad scale patient surveys of the clinically relevant population. For instance, of patients who have been diagnosed with Lyme disease by physicians–what percentage were diagnosed based on CDC two tiered surveillance criteria or CDC western blot criteria? No one has asked these questions on a broad community basis. Our first large scale survey drew more than 4,000 responses and found that approximately 34% of patients were diagnosed based on either CDC two tiered serology or CDC positive western blot. Another 40% had other supporting serology, like positive PCR testing. Our goal is to develop this type of data in part to help better define this population. We think it is an essential part of pressing the dialogue forward with information from patients.
The IDSA is so entrenched and unresponsive to patient concerns that they are deleting legitimate posts on their facebook page. When medicine absolutely will not consider what a large number of patients say, in addition to all the research they ignore, this a threat to public health.