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FOIA Request for Public Comments to P2P Draft Report

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

  1. Wally

    Wally Senior Member

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    Today I submitted a Freedom of Information Act (FOIA) request for the Public Comments submitted to the NIH/ODP in response to the ME/CFS P2P Draft Executive Summary Report. It is my understanding that approximately 90 (ninety) Public Comments were received.

    The FOIA request that I have submitted states that I will accept redacted copies of these documents should the NIH find there is information in the Public Comments that they believe falls within an exclusion or exemption to disclosure under FOIA law. The request was made in this manner to allow for an expedited processing of the request by not requiring notification of any claim of exclusions and exemptions, prior to sending out these documents. If I receive any redacted documents, a determination can be made if additional FOIA requests will be needed in order to trigger a formal appeals process to challenge any exemption or exclusion claimed for the information that was redacted. While an exact time frame for when a response to my FOIA request will be completed could not be provided, the NIH FOIA Coordinator assigned to handle this request believes that her staff will be able to provide this information within the next 3 (three) weeks.

    I have also asked that copies of the Public Comments be provided to me in electronic form. Once these documents are received they will be posted online. If MEAdvocacy.org is able to host/store the documents on their website, this is where the documents will be made available for public viewing. I will post again in this thread when I can confirm receipt and viewing location of these documents.

    Please feel free to re-post this information on other sites.
     
    Last edited: Jan 20, 2015
    Delia, Valentijn, Roy S and 3 others like this.
  2. Wally

    Wally Senior Member

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    Status Update (as of 2/23/2014) as to the estimated date for response to my FOIA Request.

    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.
     
    medfeb likes this.
  3. jimells

    jimells Senior Member

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    Good News! I have received a CD of the P2P Comments. I sent my FOIA request just before the end of the comment period, but I've been too sick to follow up. Names and addresses have been redacted, except for officials. I don't know how many comments there are on the CD.

    After many years of working in many different offices of all kinds of organization, I am no longer amazed at the inefficiency and general incompetence of large organizations. "Economies of Scale" do not apply to bureaucracies. And yet, in spite of my cynicism, I still have to shake my head at what HHS sent me.

    The CD is a single pdf file, 308 pages long. Each page is a photocopy of an email printed on paper. Apparently the only redaction tool authorized by The Goberment is a magic marker on paper. Someone actually printed every electronic comment , then marked out names and addresses, then loaded them into a scanner (one page at a time? many pages are skewed), then burned a CD. I don't know if this is standard procedure, but it sure makes it hard for me to use effectively. Since it is one 48 MB file, I can not upload it over my dialup connection to anyone's web site.

    If someone like @Wally would like a copy of the CD, send me a message.
     
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  4. jimells

    jimells Senior Member

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    I haven't looked over the comments much, but the very first one is quite interesting:

    From: Lee, Nancy C (HHS/OASH)

    To the Workshop Panel:
    Until earlier this month, I was the Designated Federal Officer of HHS's Chronic Fatigue Syndrome Advisory Committee. I am also the principal HHS contact with the IOM on their study of diagnostic criteria for ME/CFS, which was funded by my office, as well as 5 other agencies, including NIH. [bolded original]

    My comments are regarding lines 202-212 of the draft Report:
    These lines recommend that "disease parameters" of the ME/CFS be defined. Nowhere in the entire report is the IOM study (entitled "Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome") mentioned, although IOM study's task is quite similar to this recommendation from the P2P panel. (See the IOM tasks at [some gigantic URL I'm not going to type in] ) The report from the IOM is nearing completion and is expected to be released to the public in early February 2015. The HHS study sponsors do not yet know anything about the content of the IOM report; we won't be given a copy of the report until just a few days before its public release.

    Of note, the IOM study panel included representation from the following stakeholders: several ME/CFS expert clinicians and researchers; a patient with ME/CFS; and a parent of an ME/CFS patient.

    To avoid the mistaken perception that NIH and the P2P Panel didn't know about the IOM study (which NIH helped fund!), I urge you to mention the IOM study in your report. The discussion on lines 202-212 should be modified to acknowledge that the IOM's report may make substantial progress in fulfilling P2P recommendation. There is a good chance that the IOM report will be released before the Panel's report so you might even be able to modify your report at the last minute to reflect the content of the IOM's report.

    HHS spent $1million on the IOM study to get much of what your panel recommends on line 202. I don't want it to appear that NIH's right hand doesn't know what it's left hand is doing!

    Thank you for your consideration of my comment.

    Nancy C. Lee, M.D.
    Deputy Assistant Secretary for Health-Women's Health
    Director, Office on Women's Health/OASH/OS/HHS

    --------------------------------------------------------------------------------

    Well, as always it's all about image, not substance. We certainly wouldn't want the public to think we wasted $2 million on reports that don't tell us anything new. It will certainly be interesting to see how the P2P Report changes to reflect the IOM Report...
     
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  5. jimells

    jimells Senior Member

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    @Wally I received a second CD of the P2P Report Comments. I was completely surprised to get this, since I didn't ask for the additional comments that were misplaced. The CD came with a letter that appears to have been signed in person by the NIH FOIA officer.

    I appreciate that someone at NIH is taking the trouble to fix this screw-up - I'm shocked that they are going out of their way to make this right (and hoping this is a start of a trend).
     
    ahimsa, Valentijn and mango like this.

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