Did P2P Receive Your Comments?

missingpagesThe P2P report is scheduled to be published on April 14, 2015, but new information may call the legitimacy of the report into question. Based on NIH’s response to my FOIA request, I believe it is possible that the Office of Disease Prevention (ODP) never properly logged some of the public comments on the draft report – including the comments from the CFS Advisory Committee.

First, a brief review of the public comment issue. In early January, ODP told advocates that public comments on the P2P draft report would not be retained. Several advocates, including myself, filed FOIA requests for those comments. In the meantime, I offered to publish the comments of any advocate or organization who wished. The P2P Library is quite impressive, and a terrific example of the quality work of many advocates.

On February 27, 2015, NIH responded to my FOIA request with 308 pages of public comments. I knew there would be comments in the packet that I had not seen before, but I did not expect comments to be missing.

But that is exactly what I discovered. Dozens of comments that I know were submitted to the ODP were not included in the FOIA release. Here are three examples (although there are many more):

Why were these comments omitted from the FOIA release? I can think of two explanations. One possibility is that the FOIA office’s document search was grossly inadequate, and they missed dozens of comments collected by ODP. The second possibility is that ODP did not properly retain some of the comments submitted by the public, and therefore those documents were not available for the FOIA search and release.

If this second possibility is true, then the P2P panel never saw CFSAC’s comments, or the many other comments that we know were submitted on time. And if that is the case, then ODP breached its own policies, and the panel did not have the benefit of all those comments in revising the P2P report.

Throughout the P2P process, NIH has touted the public’s role of participating in the meeting and commenting on the report. Stakeholder participation improves the quality of the reports and helps the non-expert panel balance all sides in the final product. Now we must confront the possibility that reams of public comment on the draft report were lost, discarded, or otherwise went missing. How can we say that the April 14th report is, in fact, the best product of this process?

I have appealed the FOIA release, challenging the adequacy of the document search. If ODP has these comments, then a second search should capture them. I’ve also reached out to the P2P panel in an attempt to verify whether they received these missing comments. As always, I’ll let you know what I find out.

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17 Responses to Did P2P Receive Your Comments?

  1. P K Kühl says:

    Gosh Jennie I cant remember if I left/sent comments or not & sadly I didnt keep a record I guess I didnt think I needed to I shouldve known better.So glad youre on top of this.Thank you X 100.

  2. Joe Landson says:

    They got the comments I made in person at the meeting. Showing up is the hardest thing for us, mentally, physically, and often financially. And yet showing up is perhaps what we most need. Phoning and sending it in, not so much apparently.

  3. Charmian says:

    Jennie, Thanks so much for your careful attention to detail (as always) on this. This is truly disturbing. Also for the record, the comments submitted by Massachusetts CFIDS/ME & FM Association were co-signed by the Connecticut CFIDS & FM Association and represented the views of the Connecticut Association as well.

  4. Anne Ö says:

    NOOOOOOOOOOOOOOOO! I don’t believe this!

    So much work was put into those comments. It’s absolutely unacceptable if they didn’t all reach the P2P panel in good order.

    And the comments you mention, those from the CFS Advisory Committee, the Massachusetts CFIDS/ME & FM Association and Mary Dimmock were some of the best and most important.

    Thank you for doing this tedious and disheartening work. We need you!

    If you hear from the panel that they DID get those comments, please let us know, it would be a great relief.

  5. Betsy says:

    You’re amazing Jennie. Thanks so much for using your intelligence, knowledge and passion to look out for us.

  6. NA Wright says:

    Clearly not acceptable that comments may not have been addressed. However I wonder whether there isn’t a commonplace explanation somewhere between the extremes of gross incompetance and of malign intent. I certainly received an acknowledgement email, and I would assume therefore that there would have been an initial logging process of received submissions. The question would be what followed the receipt management – it’s quite possible that the staff managing the email receipt process were not servicing the P2P panel directly but were charged with fowarding the submissions to the servicing staff. If the FOI search was done only at one end, it’s possible the logs would be incomplete because one set of administrative staff were relying on the other for maintaining the log, without any cross checking that logs were consistently updated. It is conceiveable submissions were all forwarded and addressed by the panel but that the log database was incomplete.

    When sending material by email it’s good practice always to expect an acknowledgement of receipt and if one is not provided in a timely fashion, resubmitting the material and asking for specific acknowledgement, is the smart thing to do. It’s not enough to rely on the automatic receipt setting of an emailer programme because that can be triggered even when a message is directed into a spam trap, virus shredder or is currupted in some way. Anyone who did not get an acknowledgement from “Prevention (NIH/OD)” prevention@mail.nih.gov within a few days of sending in their submission probably shouldn’t be certain that their submission was actually received.

    The receipt message read: Thank you for your message. Your comments have been forwarded to the workshop panel.
    Best regards,
    Office of Disease Prevention
    National Institutes of Health

    Anyone with such a receipt might but whose submission doesn’t show up in the FOI return probably has grounds for asking the NIH to look into what happened.

    • NA Wright says:

      Ok this was wonderfully garbled (though probably reflective of my thinking at the time, strike through makes it more readable: Anyone with such a receipt might but whose submission doesn’t show up in the FOI return probably has grounds for asking the NIH to look into what happened.

  7. What a tremendous job you have taken on, Jennie. Our heartfelt thanks to you.

  8. kathy d. says:

    Thank you so much Jenny, but I feel like this is deja vu all over again, as the saying goes.

    There may be a more nefarious reason than disorganization and sloppiness. It’s just unbelievable.

    It’s good you are on the case, are checking what documents were omitted and are
    following up on this.

    It is starting to sound like lawsuits may be the next step if we don’t get this resolved

    I wonder what the reply will be to your questioning of what was left out.

  9. Susanna says:

    Thank you Jennie for doing all this detailed work which must have been tedious. It is stunning incompetence and carelessness if all the comments did not make it to the P2P panel. I look forward to hearing at what point the exercise failed. Good luck Jennie.

    As NA Wright points out, it is important to get a receipt. I had to keep trying after the first time I submitted, there being no response at all at first. That already left me unimpressed. I submitted at least two more times to make sure. Who knows how that was counted in the end! What a hopeless bureaucracy!

  10. Jane says:

    I submitted comments on Jan 2nd at 11:58pm. Hope they were counted. Thanks for all you do Jennie!

  11. Kathy D. says:

    Well, for one thing, emails have proof that they were sent and the date and time, so they can be recovered from the “sent” section of the email program.

    Also, one can sent via Fed Ex with signature required or by post office registered or certified mail with signature required.

    This is ridiculous! I can’t believe it’s all disorganization or incompetence. Maybe
    there isn’t anyone assigned to deal with the snail mail and emails. Maybe this
    office just doesn’t care.

  12. billie moore says:

    Jennie, do you know of any person at the NIH we could contact to complain about this – someone who has some authority to look into it and might be effective (if anyone there ever is)? A number of emails or calls might get their attention.

    • Jennie Spotila says:

      It depends on the reason for the omission of the documents. If the fault is on the FOIA office end, my appeal is the only way to address it. Emailing them won’t make any difference.

      If the documents were omitted on the Office of Disease Prevention end, then the Director of that office is ultimately responsible for ensuring proper procedures for handling public comment are followed. Again, I don’t know that emailing or calling will make a difference, unless those comments are still sitting around the office somewhere and were simply not given to the FOIA office and/or the panel. If the comments are gone, they’re gone.

  13. Jim Ellsworth says:

    I received a CD of the comments a few weeks ago. It is also exactly 308 pages, so I expect it is identical to what you have received. I have not examined the comments closely; I’ve barely been well enough to keep my driveway plowed (and there’s another storm coming Saturday.)

    The process of fulfilling FOIA requests demonstrates the continuing incompetence of these agencies. The CD I have was created by printing each email on paper, then scanning the paper back into a computer as an image, then creating a pdf file and burning it to a CD. Somewhere along the way personal contact info was blacked out. Because the documents in the pdf file are all images rather than text, there is no way to search other than viewing each of the 308 pages with my own eyes. Very clever.

    A document selection process that is incomplete would certainly be in keeping with how these people operate.

    I wonder what happened to all those printed emails – did they mail them to somebody, or just dump them in the circular file?

    • Jennie Spotila says:

      Every FOIA response I have ever gotten that included emails has them printed out and then scanned back in. Personal contact info, and various other things, are blacked out by the FOIA review officers prior to release. They have to go through each page and consider if any FOIA exemptions can be applied, and then black out that info. You can appeal the redactions, but in the case of personal contact info that is almost never lifted. I’ve succeeded but only in very limited, specific circumstances.

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