If you want it, pay for it: IOM public access file

[Nielk]

Wildaisy of mecfsforums has inquired about accessing the public file for ME/CFS. Here is their response -
http://www.mecfsforums.com/index.php/topic,19282.0.html

A List of Materials for the Public Access File on the referenced project(s) is included in this email as an attachment.

If you are interested in any item(s) on the list, make your selection and send this office an email requesting a copy of the specific items. This office will inform you of the fees and how to pay for materials.

FEES:

1-20 files on cd's: $12.00
21-50 files on cd's: $20.00
51 or more files on cd's: $50.00

• We do not transmit files by email.
• No charge for postage; shipping is free via USPS.
• Payment by check or money order only.

Thank you for your interest in The National Academies.

 

[Bob]

We could each contribute $1 to Wildaisy if necessary, until we reach $50.

 

[Esther12]

Yeah - it doesn't seem like too high a charge (tbh, I don't really understand the specifics of what was requested... I'm pretty much always in favour of getting more data out there though).

 

[justinreilly]

Weak! They should just post all of it publicly. All the materials they have are probably in electronic format anyway. They might have to scan a few, but they are getting paid $1M taxpayer money!

These materials were all submitted by the public, it's not like they did any work to generate them or own the copyrights to these works. Now they are charging the public to read documents written and copyrighted by the public.

 

[Andrew]

Attached is a list of what was in the file as of 1/10/2014.

If you recall, they requested feedback on the composition of the panel. I submitted my feedback. I don't see it on the list. If you gave feedback regarding the panel, see if it is there. Or see if there is one document that contains all of our feedback.

 

[Ren]

@Andrew - unless there is one document containing all of the public feedback regarding composition of the panel - my own statement to IOM from this time is missing from the document you posted. I do, however, have a copy of a confirmation email from IOM (December 2013) saying that my email would go in the public access file. So, why is it missing? And how many are missing? I've heard at least one other person say their comment was missing as well.

Also, does anyone know if the fee for the (so-called) public access file is a one-time fee - or are individuals required to pay the fee each time they request the opportunity to see updates to the (so-called) public access file?

And does anyone know if the public is free to share the public comments in the public access file - or has IOM copywrited the non-censored content of the public access file?

Since IOM reports (many - if not all in recent decades) are FREE to be read online or downloaded, and since IOM has a webpage which boasts IOM's own social media capibilities, etc., it's quite obvious that charging a fee and using snailmail and CD "technology" are very crude and purposeful tactics to further flaunt IOM's power/abuse and censor its victims, etc. Just as IOM limits individuals' free speech by stating discussions of personal health are verboden. http://iom.edu/Activities/Disease/D...elitisChronicFatigueSyndrome/2014-JAN-27.aspx

Edit: Thanks also, Alex Andrew , for sharing the above file.

 

[alex3619]

@Edit: Thanks also, Alex, for sharing the above file.

@[USER=12637]Ren That would be thanks @Andrew?

The IOM is required to make the information accessible to the public. Could a case be made that this severely limits access?[/user]

 

[Ren]

Re - would that be "thanks Andrew": Yes! But now it's of course also, thanks @alex3619. It would be good to know how "access" is legally defined. The below*, 2011 NAS press release boasts of how free online content encourages access, so it seems quite evident that IOM is aware that the opposite discourages access.


I wanted to also add that the email confirmation mentioned above included, from IOM: "Thank you for your interest in the IOM’s study on Diagnostic Criteria for ME/CFS. As with any information sent to inform the committee, it will be placed in our Public Access File in compliance with Section 15 of the Federal Advisory Committee Act."


*And regarding the National Academies of Science's own statements on digital media:

"...As of today [2011] all PDF versions of books published by the National Academies Press will be downloadable to anyone free of charge. This includes a current catalog of more than 4,000 books plus future reports produced by the Press.

The mission of the National Academies Press (NAP) -- publisher for the National Academy of Sciences, ...Institute of Medicine, and .... -- is to disseminate the institutions' content as widely as possible while maintaining financial sustainability. To that end, NAP began offering free content online in 1994...

"Our business model has evolved so that it is now financially viable to put this content out to the entire world for free," said Barbara Kline Pope, executive director for the National Academies Press...

Based on the performance of NAP’s current free PDFs, projections suggest that this change will enhance dissemination of PDF reports from about 700,000 downloads per year to more than 3 million by 2013...

The free PDFs are available exclusively from the NAP’s website, http://www.nap.edu/, and remain subject to copyright laws. PDF versions exist for the vast majority of NAP books.

Contacts:Lorin Hancock, Media Relations AssociateShaquanna Shields, Media Relations AssistantOffice of News and Public Information202-334-2138; e-mail news@nas.edu"


http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=06022011

 

[WillowJ]

this looks like the feedback specifically about diagnosis, given the file name. Feedback about about the panel makeup should logically be displayed elsewhere.

 

[Bob]

this looks like the feedback specifically about diagnosis, given the file name. Feedback about about the panel makeup should logically be displayed elsewhere.

I think the file name ('Diagnostic Criteria for MECFS') might refer to the function of the IOM committee.

The pages within the document have the following title:
'IOM Study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'

 

[Ren]

Additional thoughts:

The Institute of Medicine (IOM) is a "private, non-profit society" (http://www.nasonline.org/about-nas/mission/). There are aprox. 17 million people with ME worldwide. Does the Institue of Medicine (IOM) need/have a business plan to address potential funds collected by charging 17 million individuals 50 USD for access to public testimony?

Should the Institute of Medicine (IOM) have a clause/statment somewhere which notifies the public (individuals) that their original writings will be sold by the Institute of Medicine (IOM)?

Additionally and in regard to the reference in post 8, the Institue of Medicine (IOM) boasts that during its pre-free pdf reports era, Institute of Medicine (IOM) information was sold at a discount to individuals in developing countries. Do individuals in developing countries today receive a discount when they pay to access Institute of Medicine (IOM) public files?

Do Institute of Medicine (IOM) panel members have to pay for access to the Public Access File? What about Institute of Medicine (IOM) or NAS employees? HHS/SSA (NIH) employees? Are they allowed access? How does this affect their legal obligation to remain outside the project? How does the Institute of Medicine (IOM) distinguish who must pay and who can freely access public content?

Who is in charge of censoring the Public Access File? Does the panel see all emails/info - or only that which has been censored?

And as a final note regarding free-speech limitations (also noted in post 6) - Who authored and who approved the statement that individuals shouldn't speak about their health experiences?

(http://iom.edu/Activities/Disease/D...elitisChronicFatigueSyndrome/2014-JAN-27.aspx)

 

[justinreilly]

Someone, I think Jennie Spotila, had asked IoM a while back and they said that comments TO the committee would be put in the public access file, but comments about the committee, i.e. who should be on it, would not.

Nice way to hide objections to the fact that biased people like Alegria are on their panels.

 

[alex3619]

We could put out a call for everyone who posted comments to send a copy here, for reposting, or somewhere else if no Phoenix Rising. Facebook? In any case this is a work-around and many comments would be missed.

 

[Nielk]

I just received this reply from them:

Thanks for you continued interest in the IOM Study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Please note that submitted comments that address committee composition are directed to the institution, not to the committee, and are not included in the Public Access File (PAF) for the Study.

 

[Bob]

I submitted a document that was focused only on the committee's work. The document didn't mention the composition of the committee or administration procedures etc. But I'm not included in the list.

 

[Denise]

When I looked at the list of things in the Public Access File for this project, it looked as though they must be still processing materials for the file as the most recent date seems to be the 10th of January 2014.
Whoever is asking for the material might want to wait a bit longer and see how much is added to this list.

 

[Ren]

My submission was a general protest regarding the contract itself and awareness regarding past committees' controversial work on CFS, misinformation, fraudulent research, consequential medical abuse, etc . It was submitted during the time when everyone was commenting on the current panel - but the confirmation email I received said it would go into the Public Access File.

I just sent an email to ask about the above - would at least be nice to know where the original went. In response, I just received an automated message saying, "We will review every message, but are unable to respond to all emails. If your email includes substantive information sent to inform the committee, it will be placed in a Public Access File in compliance with Section 15 of the Federal Advisory Committee Act."

So before, it was "any information sent to inform the committee" will placed in a Public Access File. Now it's "substantive information" will be included in the Public Access File.

 

[Nielk]

@Ren - that's the message that I initially got too. It took about ten dYs to get an actual reply.