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Reasons why we should continue to fight the HHS/IOM Contract - the misconceptions and realities

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Nov 8, 2013.

  1. Nielk

    Nielk

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  2. Nielk

    Nielk

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    .

    The Institute of Medicine claims that once they start the study, there is no further input from the sponsors of the study, yet by the nature of the Statement of Work, we see how that is not true.
     
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  3. Denise

    Denise Senior Member

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    This is an interesting point and one we should get clarification on .
    I wonder if the response would be that technically NIH is not a sponsor so coordinating with that EbMW (which has been contracted out - neither AHRQ or NIH are conducting it) would not be seeking input.
    From what I have seen on the IOM website - the study sponsors sometimes participate at the first meeting to describe/clarify the nature of the project and the charge to the committee.
     
  4. Nielk

    Nielk

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    The Statement of Work states:

    This sounds to me like NIH will have monthly 'communications' with the IOM. Is that ethical?
     
  5. Nielk

    Nielk

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    This is from the IOM website:

    (my bold)

    How will they reconcile the fact that the Statement of Work charges them to "coordinate with NIH’s Evidence-based Methodology Workshop to “assure that relevant information is shared and key messages are coordinated"?
     
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  6. Ember

    Ember Senior Member

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    I noticed that apparent conflict with the SOW too, Nielk. Jennie comments, “If HHS manages or controls the committee, HHS cannot use the definition. If the report is not the committee’s independent judgment, HHS cannot use the definition:”
     
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  7. Nielk

    Nielk

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    This is a very important point. How can they simultaneously work in tandem with them yet, stay out of the process? Impossible!
     
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  8. Ember

    Ember Senior Member

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    They've been directed to review too the unpublished data from the ongoing CDC Multi-site Clinical Study of CFS. Dr. Unger has been trying to create a definition using PROMIS questionnaires. Here's Dr. Jason's assessment of these:
    Of course, repeat exercise testing is verbotten.
     
    Last edited: Nov 9, 2013
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  9. Ember

    Ember Senior Member

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    The SOW mandates coordination, but it smacks of orchestration. By contrast, Health Canada did not interfere with the experts' work during the development of the CCC:
    No strings were attached.
     
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  10. Nielk

    Nielk

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    Ember quotes the CCC -

    (my bold)

    Isn't that accepted practice for establishing diagnostic criteria for diseases? - that all panel members have experience with the disease?
     
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  11. Ember

    Ember Senior Member

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    The IOM aims perversely to balance expertise with ignorance. As Kate Beck explains, “Ultimately, the diagnostic criteria recommended by the committee will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important.”:eek:
     
    Last edited: Nov 11, 2013
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  12. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    since they are mandated to consider unpublished data, we must insist that they consider clinical experience and good studies that do not qualify as "evidence-based." No disregarding good information because it is not "evidence-based."
     

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