Comments on P2P draft report are due by 16 Jan 2015

[Wally]

@Wally, I'm not quite sure if you are still seeking Jennie's unofficial transcript of the CFSAC recommendations for P2P, but if you are, Jennie's document is here:
https://dl.dropboxusercontent.com/u/57025850/P2P Library/P2P CFSAC unofficial.pdf

@Bob,

Thank you for posting the location of this document. I was sure that I had seen it before on Jennie's blog, but when I went looking for it again I could not find it. So, I thought perhaps I had just imagined that I had seen it before. I seem to be doing this a lot lately , so I apologize for unintentionally bringing you along on my memory roller coaster. Definitely time for me to take a long winter's snooze. Or perhaps I just need to replace some worn out nuts and bolts in my brain.

Wally

 

[Bob]

So, I thought perhaps I had just imagined that I had seen it before. I seem to be doing this a lot lately , so I apologize for unintentionally bringing you along on my memory roller coaster.

lol, no problem, and you're in good company on your memory roller coaster... I'm always having to double-check to see if I did actually read something and haven't made it up! If you find a good nuts and bolts supplier for your brain then please let us know!

 

[Denise]

@Hope123,


P.S. I am also in the process of getting all the written documents submitted to the ME/CFS IOM Committee "by any organization or by individuals who are not officials, agents or employees of the institution". I also plan to make those documents available for viewing. Right now it looks like there are about 258 submissions. While the IOM Report will be publicly released on 2/10/2015, the Committee/Project will not come to an end until 3/22/2015. I have been told by IOM Staff assigned to the ME/CFS Project that information can be submitted thru 3/22/2015. To cover all the bases, there will be two requests made for documentation - one now and one after 3/22/2015.

@Wally - what information will you redact from the documents submitted to IOM before posting them? (for instance, some documents include email, snail addresses)

 

[Wally]

@Wally - what information will you redact from the documents submitted to IOM before posting them? (for instance, some documents include email, snail addresses)

@Denise,
Good question and one that I have been pondering because I don't know if all the people who submitted comments were aware that these documents would be available for the public to view (same issue with the P2P documents).

My plan was to look through each document that is provided to see if there is any personal information that was not redacted. If there is personal information such as addresses, phone numbers etc... I would not want to be the one releasing this information for public view, so if possible I would redact this information or alternatively not post the document.

I am pretty sure that the names of the commenter will appear on the documents because I have already seen this information on the listing of documents. So, I am still pondering how to handle this should there be people (patients) who submitted comments without understanding they would be made public.

I would be open to hearing any thoughts or concerns you or others might have about these issues because it is not my intention to post these documents to create any privacy concerns for people within the ME/CFS community. I have personally handled many Public Records Act Requests in my past life, so I am familiar with the care that is needed when preparing documents for release. So, it will be my intention to be very mindful of any potential privacy exposure that could occur with a broader public release of the documents.

 

[WillowJ]

I am pretty sure that the names of the commenter will appear on the documents because I have already seen this information on the listing of documents. So, I am still pondering how to handle this should there be people (patients) who submitted comments without understanding they would be made public.

About a a fifth of the comments to Jennie's library requested to be anonymous. Without being able to ask about each submission, it may be better to make all of them anonymous. As Hope said, generally this information would be collected during submission.

 

[Wally]

About a a fifth of the comments to Jennie's library requested to be anonymous. Without being able to ask about each submission, it may be better to make all of them anonymous. As Hope said, generally this information would be collected during submission.

@WillowJ,
There are comments that have been submitted by organizations not just individuals, so I don't know that making every submission anonymous would be the right decision. There may also be comments that individuals have made public on other public platforms, for instance some of the comments may be the same comments that were read aloud at the IOM ME/CFS Committee Meeting that was open to the public and recorded for viewing on the IOM's website.

The greatest concern I have is about individual comments where names, addresses and other personal information may have been provided in their comment to the committee without a realization that their comment could be viewed and released to the public. As I said earlier, I am still considering how much of the information received from these public records act requests will be disclosed and I am also waiting to see what information has been redacted from these documents.

Here is some information about public records that might be of interest to read.

https://www.privacyrights.org/ar/onlinepubrecs.htm
http://www.dmlp.org/legal-guide/publication-private-facts

 

[Hope123]

@WillowJ,
There are comments that have been submitted by organizations not just individuals, so I don't know that making every submission anonymous would be the right decision. There may also be comments that individuals have made public on other public platforms, for instance some of the comments may be the same comments that were read aloud at the IOM ME/CFS Committee Meeting that was open to the public and recorded for viewing on the IOM's website.

The greatest concern I have is about individual comments where names, addresses and other personal information may have been provided in their comment to the committee without a realization that their comment could be viewed and released to the public. As I said earlier, I am still considering how much of the information received from these public records act requests will be disclosed and I am also waiting to see what information has been redacted from these documents.

Here is some information about public records that might be of interest to read.

https://www.privacyrights.org/ar/onlinepubrecs.htm
http://www.dmlp.org/legal-guide/publication-private-facts

1) I don't know what form you will get comments in but there is the possibility that you yourself may not need to address this at all because the agencies themselves will remove identifiable information.

2) You may also want to ask how the submission process was handled for the different documents requested. For example, if it was clearly expressed that comments would be available to the public later on, then you might consider just releasing the notes as is. Because the documents are publicly available, even if you redacted any info, others could still obtain the documents with the names, etc. and publish them in the future so you redacting them may decrease but not prevent public release.

3) For everyone else, a reminder to read instructions carefully before submitting esp. to notice if comments will be public later on. BTW, even if anonymity is not offered, you can always use aliases/ throwaway e-mail box to submit comments.

4) For most organizations, my sense is if they release a statement about a public event and it is not expressly said to keep said statement confidential, it is likely OK to publish their comment, esp. if they have already publicized it otherwise.

 

[Sing]

Not sure if this is the best, or only thread to ask this, but what happened with the CFSAC's official response to the P2P committee? I thought we were going to see that by now. Then when can we expect the P2P committee's final report? Anyone know?

 

[Denise]

Not sure if this is the best, or only thread to ask this, but what happened with the CFSAC's official response to the P2P committee? I thought we were going to see that by now. Then when can we expect the P2P committee's final report? Anyone know?

As far as I know, the official CFSAC response is due to be posted on the CFSAC website when it is 508 compliant. I assume it will be posted on the recommendations page (http://www.hhs.gov/advcomcfs/recommendations/index.html).
The unofficial HHS transcript is here:
http://www.hhs.gov/advcomcfs/meetings/index.html

In theory the final P2P report is due around the 10th of February. That might change though depending on how thoroughly they read and incorporate comments - since at least 90 sets of comments were submitted.

 

[Anne]

Here are the CFSAC comments:
http://www.hhs.gov/advcomcfs/recommendations/cfsac-pathways-to-prevention-january-2015-updated.pdf