Link and Notes ~ Lymedisease.org/LYMEPOLICYWONK IDSA Guideline Comment Survey

The Comment Period ends April 9.  Just published ~ a survey opportunity via Lymedisease.org in order to submit comments to IDSA’s Lyme Guideline Review Project Plan Public Comment Period (ending April 9).  You can see my other posts and links on this topic listed here.  MayDay Project press release here (regarding comment period and meeting with IDSA President).

*It is recommended, per comment response (see below) that people take this survey first, and also comment if you are up to it (both are important).


“Raise your voice with ours–and let’s be heard as a community! The IDSA guideline revision process is very important to patients. The guidelines panel is required to consider outcomes that are important to Lyme patients. But it has excluded them. This survey is your opportunity to tell the panel what outcomes are important to you.” – See more at: http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-idsa-guidelines-survey.html#comment-12286

I love the surveys they prepare and the way they present their results (their methodology paired with consistently large sample size).

Accessibility is a major concern of mine, and though I’m not sure how to back it up in my comments, I really believe a comment period like this should be structured more like a government-agency planning  processes (did I really just say that….I guess I did).  By this I mean the idea of public scoping when a project is being developed (in this case before the panel and questions were set), or at least public notice earlier. This would have provided forewarning of the project and (a first round of) input at a more reasonable phase of project development.   Additionally, written comments should always be accepted, in my opinion.  I feel the structure of the submission form alone was limiting to patients in many ways.

*My biggest question regarding this survey is whether it [was] whether it is intended to replace a person’s individual comment, posted in comments as follows (when you read the article, perhaps there may be an answer there):

I believe this will help many patients intimidated by the process.  Accessibility is one of my biggest concerns with the comment period, given how it is structured.  Is participation in this survey intended to replace individual comments, or welcome/appropriate if intended to be additional to them?  I’m also wondering about the option to add question suggestions via the survey (subject to the answer to the question above).  As a biologist, the rigour of your surveys always does my heart good!

Response from admin 3/28/15:

Angela, we recommend that people take the survey first. It should take no more than 10 minutes. Then, if you’re up for it, give comments on the IDSA website. Both are important.


3 comments on “Link and Notes ~ Lymedisease.org/LYMEPOLICYWONK IDSA Guideline Comment Survey

  1. […] They promptly answered the question you may have seen here yesterday and in the post about their survey.  People are encouraged to fulfill the survey (asap) and then, if able, submit their own comment, […]


  2. […] patients responded to Lymedisease.org’s survey request.  This is fantastic, as the more responses they receive the more validity each comment has, both […]


  3. […] Link and Notes ~  Lymedisease.org/LYMEPOLICYWONK IDSA Guideline Comment Survey (March 27) […]


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