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Release Date for the P2P Final Report

Discussion in 'Action Alerts and Advocacy' started by Wally, Jan 20, 2015.

  1. Wally

    Wally Senior Member

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    I had an opportunity today to speak to Wilma Peterman Cross, Deputy Director with the Office of Disease Prevention ("ODP"), to ask whether a release date for the ME/CFS P2P Final Report has been set. I was told that an exact date for when the report will be completed and when it will be released to the Public has not yet been determined. However, the ODP does not plan to coordinate a release date with the release of the IOM Report on 2/10/2015. They also believe the P2P Final Report will be ready for release prior to the release of the IOM Report. An estimated release date for the P2P Report will be within the next 2 to 3 weeks.

    The P2P Final Report will be posted on the NIH/ODP website. Here is the link where the report will be posted. https://prevention.nih.gov/programs...revention/workshops/me-cfs/workshop-resources
    Notification of this posting will also be sent to anyone who has signed up to receive e-mail notifications from their list/serv. Here is the link to the NIH/ODP website where instructions for signing up on the list/serv can be found. http://visitor.r20.constantcontact....CXUr0i8apzfcxMncECt2W6w1iuK_2WROq_VKMZWaUnos=

    There will also be a Press telebriefing for the release of this report. The date for this Press event is not yet known, but it will be on the day of the release or shortly thereafter. Members of the Public may listen in on this Press event, but questions will only be allowed from members of the Press. Information about the date and location for this event will be posted on the NIH/ODP ME/CFS P2P Worshop Resources web page. Here is the link where this information will be posted. https://prevention.nih.gov/programs...revention/workshops/me-cfs/workshop-resources

    In addition to the links given above for the location of the Final Report, as well as information about the Press telebriefing, here is an example of how the NIH/ODP posted the Final Report and provided information about the telebriefing for the P2P Report for "The Role of Opioids in the Treatment of Chronic Pain". See, https://prevention.nih.gov/programs...s-chronic-pain/workshop-resources#finalreport

    Once notification is received that the Final Report has been released a link to the report will be included in this thread. In addition, when information is posted about the time and location for the telebriefing it will also be added to this thread.

    Please feel free to re-post this information on other sites.
     
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  2. Anne

    Anne Senior Member

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    Thank you so much for this! Please keep us posted.

    A thought: If the release date for the P2P Final Report is estimated to be before Feb 10, that doesn't leave a lot of time for the panel to read and process all the comments and make changes to the report...?
     
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  3. Anne

    Anne Senior Member

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    And a question:

    I heard the AHRQ report is going to be published in a medical journal - and the P2P Final Report will too. Do we know anything about the time-frame for these publications?

    Would the AHRQ report be published separately and first?

    I'm asking since we just dodged the media spin from the latest PACE article here in Sweden, and I'm guessing we can expect a similar problematic spin (and a similar need for patient org responses) when the AHRQ report is out.
     
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  4. Wally

    Wally Senior Member

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    Update on the release date of P2P report.
    On Monday, Feb. 2nd, I phoned the NIH/ODP (Deputy Director, Wilma Peterman Cross) for a status update on the estimated release date of the P2P report. Not receiving a response back to my phone call, I followed up with a written request on Wednesday, Feb. 4th. A written response was received from Ms. Cross correcting information previously provided as to the estimated release date of the report. Quoted below is the updated information that I have received about the estimated release date of the P2P Report.
    I have sent a follow-up e-mail to Ms. Cross asking for additional clarification about publishing the Report in the Annals of Internal Medicine in lieu of the using the release process identified on the NIH/ODP website.
    https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs
    *Edit - At the 12/10/2014 P2P Workshop, Paris Watson stated that it will be mid February when an announcement will be made as to when and where the P2P Report will be released. See the videotape of the workshop at the time mark of 4:36:57 - http://videocast.nih.gov/summary.as...deocast.nih.gov/summary.asp?Live=14727&bhcp=1.
     
    Last edited: Feb 5, 2015
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  5. Wally

    Wally Senior Member

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    @Anne,
    See the thread where I posted updated information about the release of the P2P report - http://forums.phoenixrising.me/inde...e-for-the-p2p-final-report.35074/#post-554079
     
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  6. Kati

    Kati Patient in training

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    Thank you @Wally they are making the rules as they go, that's what they are doing.
     
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  7. Anne

    Anne Senior Member

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    Thank you @Wally ! Impressed with your work.

    Is there any chance we could find out if the AHRQ report be published separately? And in that case, in which order will the 2 items be published?
     
  8. Wally

    Wally Senior Member

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    @Anne,
    I will ask and see if I get a response.

    Does anyone happen to have a reference for when and where it was stated that the AHRQ report would be published in a Journal?
     
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  9. Denise

    Denise Senior Member

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    I assume (and it may be wrong of me to be so bold as to assume) that the publication process will be similar to the opioid P2P publications.
    If that is the case the AHRQ review is published separately from the final P2P report.
     
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  10. Kati

    Kati Patient in training

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    I believe it was disclosed from one of Jeannette Burmeister's FOIA documents.
     
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  11. Anne

    Anne Senior Member

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    Calling @jspotila

    @Denise : In the opiod case, was the AHRQ report published first?

    @Wally Thank you!

    (The reason I'm after this is I think it would be much better if the problematic AHRQ report was published first, so its effects could then - possibly, hopefully) be amended by the publication of the final P2P report. At any case, good to know what we're up against.)
     
  12. Wally

    Wally Senior Member

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    @Denise,
    Do you know if the Opioid Report was published in a Journal?
    If yes, did it appear in the same Journal at its corresponding AHQR?
    Do you know what Journal(s) published the AHQR and/or the Opioid Report?
     
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  13. Denise

    Denise Senior Member

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    The AHRQ report and the opioid report were published on the same date.
     
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  14. Denise

    Denise Senior Member

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    The AHRQ report and the Opioid report were published in The Annals of Internal Medicine on the same date.
     
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  15. Anne

    Anne Senior Member

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    Oh that's a bit worrying - I'm thinking it could make it harder for the panel to deviate from the conclusions of the AHRQ report (which we really need them to do...)
     
  16. Wally

    Wally Senior Member

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    Here is the most recent response that I received from the NIH/ODP regarding my questions about publishing of the ME/CFS P2P Report and the ME/CFS AHRQ.
    It should be noted that the responses quoted above were provided by Wilma Peterman Cross, Deputy Director at the NIH/ODP. I think it is also important for me to acknowledge that Ms. Cross has been very responsive and helpful in answering any questions that I have raised to her.

    When she provided information about the timeline for release of the P2P Report of approximately 2 to 3 weeks from the end of the Public Comment period rather than when the Report would be published in the Annals of Internal Medicine, I do believe this was just an inadvertent error.

    As I posted earlier, at the end of the P2P Workshop in December, Paris Watson had stated that the Report would be published in the Annals of Medicine and information about when the Report would be published by this Journal would not be announced until approximately mid February. I did not recall this statement from the Workshop until other people on the Forum asked the question about publishing of the Report and the AHRQ in a Journal and I went back to see where this information may have been discussed.

    I realize that there has been quite a bit of concern within our patient community as to some of the actions by the HHS and its underlying agencies regarding this illness, but I do believe that the NIH/ODP (through the responses provided by Ms. Cross) has been trying to be responsive to all of my questions, as they are aware that I will be sharing this information with others in the ME/CFS Community.

    (@Anne, @Denise)
     
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  17. jimells

    jimells Senior Member

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    northern Maine
    It's good to be the King.
     
  18. Wally

    Wally Senior Member

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    Status Update (as of 2/23/2014) as to the estimated publication date of the P2P Report.

    Per my conversation today with the NIH ODP Deputy Director's Office re the estimated publication date of the P2P Report, they believe that "[t]he publication date should be posted on the ODP website by the end of next week."

    I also have an outstanding FOIA Request for the comments that were submitted in response to the Draft P2P report. I have been told that these documents should be ready for release within about 3 weeks. The additional time that has been required by the NIH to provide these documents has been explained as a result of the following:

    1) There was a misunderstanding as to who within NIH would handle this particular FOIA Request. Originally I was directed to the NIH ODP FOIA Coordinator, but when they began processing the Request they determined that the Request should be handled by the NIH ODP P2P FOIA Coordinator, Susan Cornell, who handles all of the NIH P2P FOIA Requests.

    2) The second reason I was told that it may take a little longer for the document request to be processed is due to their workload and how requests from multiple sources for the same documents are often bundled together for processing. The NIH FOIA office believes this is more efficient and economical for their staffing requirements, as well as allowing the cost of the search to be divided between each of the requesting parties instead of charging each party separately for an individual search.

    My FOIA Request was submitted on January 20, 2015 and was acknowledged as received by the NIH on January 21, 2015. On 2/12/2015, I contacted the NIH for a status update on the progress of their response and I learned that my Request had recently been forwarded from the NIH ODP FOIA Coordinator to the NIH ODP P2P FOIA Coordinator. Based on receipt of my Request by the second FOIA Coordinator's Office during the week of Feb. 12th, they were estimating that a response to this Request would be completed within a month. I was also told that there were two (2) other Requests for the same documents that would be processed at the same time as mine.

    It is still my plan that after I have received these documents and determined that they have been redacted by the NIH to remove personally identifiable information, the documents will be made available for viewing on the MEadvocacy.org website.
     
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  19. Nielk

    Nielk

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    Good luck with the foia requests. Jeannette Burmeister had to sue them and won to get foia documents from the IOM contract. She has still not recieved them even though a few due dates have past. I am just saying.
     
  20. Wally

    Wally Senior Member

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    @Nielk,
    I decided to post information about the progress for this particular Request, so others could watch how a FOIA Request to one of the agencies under the HHS umbrella might proceed. Many layers within the HHS for FOIA Request handling, so a comparison of the process within the umbrella could be interesting. ;)
     
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