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Release Date for the P2P Final Report

Wally

Senior Member
Messages
1,167
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.
 

Anne

Senior Member
Messages
295
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...?
 

Anne

Senior Member
Messages
295
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.
 

Wally

Senior Member
Messages
1,167
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.

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 must correct my earlier statement regarding the timing of the release of the final report. While the panel should be finished with their edits this week, the final report will not be available to the public until it is published by the journal, in this case the Annals of Internal Medicine. I had forgotten to include the journal publication process in the timeline when I talked to you earlier. My apologies.

We expect to submit the report to the journal this week. After completing its normal internal receipt and processing procedures, the journal will be able to tell us the final publication date. Once that date is available, we will post the information on our website. These details should be available in 2-3 weeks. We anticipate a publication date in early spring. The press telebriefing would be scheduled accordingly.

As a reminder, you are encouraged to sign up for the ODP listserv. We will post the report on our website on the same date as the journal publication. We will also send this information via our listserv. This would eliminate the need to continue checking the site. Instead, the information will be pushed to you via email. You can unsubscribe to the listserv in the future if you do not wish to continue to get updates from ODP.
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
After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepares a draft report that identifies research gaps and future research priorities. The draft report is posted on the ODP website, and public comments are accepted for 4 weeks. The final report is then released approximately 2 weeks later.
This page was last updated 1/20/2015

*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:

Wally

Senior Member
Messages
1,167
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.
@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
 

Kati

Patient in training
Messages
5,497
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.
Thank you @Wally they are making the rules as they go, that's what they are doing.
 

Anne

Senior Member
Messages
295
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?
 

Wally

Senior Member
Messages
1,167
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?
@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?
 

Denise

Senior Member
Messages
1,095
@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?


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.
 

Kati

Patient in training
Messages
5,497
@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?
I believe it was disclosed from one of Jeannette Burmeister's FOIA documents.
 

Anne

Senior Member
Messages
295
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.)
 

Wally

Senior Member
Messages
1,167
@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?
 

Denise

Senior Member
Messages
1,095
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.)


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

Denise

Senior Member
Messages
1,095
@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?


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

Anne

Senior Member
Messages
295
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...)
 

Wally

Senior Member
Messages
1,167
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.
Are all reports that are generated as part of the NIH/ODP P2P process published in some type of medical/scientific journal prior to or at the same time that the NIH/ODP reases [sic releases] the report to the public? If not all P2P reports are published in a journal, how is a determination made that a particular P2P report will be submitted for publishing?

- Participants in the Working Group meeting discuss the option of submitting the final report to a peer reviewed journal and make a recommendation to the panel. Although this recommendation is generally accepted by the panel, the panel makes the final determination regarding submission of their report to a journal. For the ME/CFS workshop, it was recommended that the report be published in the Annals of Internal Medicine which includes a target audience of researchers, physicians, and other health care professionals. ODP works with the journal to release the final report simultaneously.


- If the panel report is not submitted to a journal for consideration, the final report is released on the ODP website approximately 2 weeks after the close of the public comment period.

Do you know if the ME/CFS AHRQ will also be published in the Annals of Internal Medicine and if it will be published on the same date as the ME/CFS P2P Report?

- Yes, the AHRQ EPC report will be published in the Annals of Internal Medicine at the same time as the panel report is published.

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)
 

Wally

Senior Member
Messages
1,167
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.
 

Nielk

Senior Member
Messages
6,970
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.
 

Wally

Senior Member
Messages
1,167
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.
@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. ;)