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Dr. Nancy Lee: Background and charge to the IOM Committee

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ember, Jan 29, 2014.

  1. Ember

    Ember Senior Member

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    Here's my partial transcription of what Dr. Maier said in response to Drs. Chu and Klimas' questions:
    I believe that Drs. Klimas and Rowe are currently serving on both on the P2P Working Group and the IOM Committee.
    Last edited: Feb 1, 2014
    Nielk likes this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Patricia Carter got a partial response to her FOIA request on the P2P.

    It has the roster of the working group as of the January 6-7 meeting. Though it says on it that it has to be revised- this could be their tricky little way of giving us misinformation as to who is currently on the committee. Rowe is listed, as Ember noted.

    EDIT: Patricia is not posting the info from her FOIA requests on her forum any more. If you want it, contact her:

    http://www.mecfsforums.com/index.php/topic,19185.msg158789.html#new
    Last edited: Feb 3, 2014
  3. Ember

    Ember Senior Member

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    After Eileen Holderman had delivered her presentation, Dr. Clayton added this comment:
  4. WillowJ

    WillowJ Senior Member

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    I actually think it's because she's connected to a major university and applies for a lot of federal grants, so they know her. I think they are not so interested in some of our doctors because they are more independent (e.g. Peterson) or don't apply for or win a lot of research grants (e.g. Chia).
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  5. Bob

    Bob

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    Nancy Klimas asked a question about information flow between the projects. They all seem to be aware of the issues we've been discussing. (Except the issue of Klimas sharing information with herself.) They agree with other that information can only flow into the IOM committee and not out of it.

    Watch at 7.00:
    www.youtube.com/watch?v=1Kv3-X4Ceh0
    Last edited: Feb 1, 2014
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  6. Bob

    Bob

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    After watching the presentation by Maier it seems to that our community should be even more concerned about the P2P process than the IOM process. It's looking at definitions for research, which is a crucial issue for our future health. There's a lack of transparency. And the P2P panel has zero ME experts sitting on it.
    WillowJ, Nielk, justinreilly and 3 others like this.
  7. jspotila

    jspotila Senior Member

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    BINGO!
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  8. jspotila

    jspotila Senior Member

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    You are correct. FACA put requirements on the National Academies, even though they are non-governmental entities, to close the loophole of the government using the Academies instead of advisory committees. When the government commissions an Academy report, there are a number of FACA rules that apply.
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  9. Chris

    Chris Senior Member

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    The prime purpose of the IOM is I understand to produce a new diagnostic definition; the prime purpose of the P2P thing is heaven knows what--so they put Jason, who has done more work on definitions and their consequences than any other mortal, onto the P2P group and not the IOM panel. Does anyone understand this better than I can?
    Chris
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  10. Ember

    Ember Senior Member

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    The Statement of Work directs the IOM Committee to communicate and coordinate with the Office of Disease Prevention at NIH regarding their ongoing P2P Workshop for ME/CFS in an effort to minimize overlap and maximize synergy. It further stipulates that such coordination should assure that relevant information is shared and key messages are coordinated. Accordingly, Dr. Maier proposes this scenerio to Dr. Klimas with reference to her serving on both groups: "Oh! OK. Here's some content that I have that I have knowledge of that I might find informative for other committees on which I sit.”

    But how can information be allowed to flow unimpeded from the P2P process into the IOM Committee given Dr. Clayton's injunction that “there will be no contact between committee members and HHS at any point from now on until the end of the study” and the FACA requirement that the committee must not be subject to any management or control by an agency or officer of the government?
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  11. Firestormm

    Firestormm Guest

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    P2P is charged in part with arriving at a Research definition I believe Chris. I'd hope that Jason is also called by IOM as an 'expert witness' for that vital clinical definition work. Good to see Mady Hornig on the P2P Workshop as well though.

    I think it is all rather hilarious myself - for years the US Govt. has done little for us, and now they are coming at us from all sides :) Mind you Govt's are never very efficient in my humble view. Why do with one process, when you can get away with three and charge for it three times? Wouldn't be as bad if there wasn't any overlap - of purpose or expertise.

    Though each is project is slightly different and the CDC Multi-Site will probably I imagine feed into both IOM and P2P definition projects as well as providing some good basic research - research that should have been done years ago - on all those diagnosed with the condition(s).

    I also don't think changing the name has helped with P2P either - but it's all bloody confusing... I think I will just wait for the results whilst turning my attention and brain cell to other matters...
    Last edited: Feb 1, 2014
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  12. Bob

    Bob

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    I've read your blog now Jennie and I see you reached this conclusion a long time ago.
    I think I've read the blog entry before but I forgot the details, probably because I didn't understand the background to it all. I still don't fully understand either the process or the intended outcome.
  13. Bob

    Bob

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    Thinking out loud...
    The IOM is allowed to have contact with HHS with regards to administration.
    And the IOM is permitted to received unlimited information, from non-HHS sources.
    But the IOM committee is not permitted to have non-administrative contact with its sponsor, the HHS. I suppose that the NIH (which is running the P2P project) falls within the dept of HHS (?), in which case any info from the P2P project should be considered to be coming from HHS?
    In which case the statement of work does seem inappropriate.

    The comment from Maier to Klimas regarding sharing info was specifically in relation to sharing info from P2P to the IOM, which would be permissible as long as it is placed in the public record, except, as you say, the information source is the NIH, which is part of HHS.

    Yes, it does seem to conflict with the stipulation the IOM committee members must not meet, or be influenced by, HHS officials.

    It's very complicated. I'm only just beginning to get my head around it all. (I haven't come across much info about it before now; Jennie' s blog has been the only thing I've read about it, which I promptly forgot.)
    Last edited: Feb 1, 2014
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    "Ensuring key messages are coordinated."

    I am repeating to some extent what has been said in the past, but this phrase sounds like propaganda control that clearly runs afoul of the "manage or control" prohibition. HHS hasn't said how they are going to do this, to my knowledge. Did anyone hear anything about this?? Clayton is implying they are not going to do this.
    Maier won't even answer Klimas' simple question. Klimas asks for permission to share stuff she gets from P2P with the IoM committee. Maier says that when the P2P coordinator gets back from vacation she may collate some information and send it to the P2P members and that can be shared with the IoM committee. Then Klimas asks if she can share an HHS produced document- a chart comparing case definitions- she was given at the last P2P and Maier says "check with Paris to be sure." Maier can't/won't even answer this simple question!

    @alex3619, Mulrow then says (starting at 12:00) that she understands the protocol for the evidence production/report for IoM is/has to be publicly available. She asks for that and asks for the preliminary (?) summary of the evidence which is usually produced during these IoM processes. I don't know why she's asking Maier though since Maier isn't involved in the IoM process that much I don't think. Alex, can you ask Mundaca-Shah for these?
  15. Denise

    Denise Senior Member

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    I believe that Mulrow was speaking to Maier about the protocol and questions (not to IOM).
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Oh, asking Maier about protocol for P2P, not IoM? That makes more sense (I was assuming she was speaking about the IoM procedure because she has chaired committees before and I didn't think she would know enough about the P2P process to ask that question)
  17. jspotila

    jspotila Senior Member

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    Mulrow was actually asking about the protocol for the evidence review. This evidence review is being done by the Evidence Practice Center contracted to AHRQ, and it is the foundation of the P2P meeting. The P2P panel will get it six weeks before the workshop. There are a variety of standard things about evidence review, including the posting of the review study protocol publicly. However, no one has been able to tell me when that will happen. Mulrow is intimately acquainted with evidence review procedures, since she ran an Evidence Practice Center for many years and conducted the 2001 evidence review on CFS.
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  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks for the clarification, Denise and Jennie.
  19. Ember

    Ember Senior Member

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    Why so little concern about these FACA rules as they apply to the IOM Committee?
  20. Nielk

    Nielk

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    Video presentation by Nancy Lee:

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