Thursday, June 26, 2008

It's Not Just the ADA: EULAR, a Rant

In my previous post I took the American Diabetes Association to task for failing to allow reporters to photograph or record any sessions. Despite my invitation to do so, Collen Fogarty and Diane Tuncer of the ADA have declined to offer any explanation for these restrictive policies.

Unfortunately the ADA is not alone in these restrictions. Today I heard from a noted medical journalist (who prefers to remain anonymous) who had a similar experience at the recent EULAR (European League Against Rheumatism) meeting in Paris. The journalist wrote:


I read your rant RE: ADA prohibitions with much interest and similar feelings of frustration. I have just returned from EULAR where similar restrictions are imposed. They are also strictly enforced (one of my colleagues who was taking photographs was physically ejected from the conference when he refused to turn over his camera).

I use audio recordings and photographs of slides as a form of note taking for the exact reasons you expressed: I cannot efficiently collect the data I need any other way. The articles I write contain real clinical information including p values, CI, HR, etc. They are researched and referenced and I work with the presenters (during and post conference) to ensure that I "got it right". At EULAR I initially opted to ignore the rules until asked to stop. When this happened (and it didn't take long), I asked why photography and recording were prohibited. The security guard (a real, headset wearing, burly, somewhat intimidating security guard not a student hired just to watch the audience) responded "We have our orders." When I took my inquiry to the EULAR committee I was given several reasons including "copyright" (?). One of the more interesting responses was "this is sensitive information that some presenters do not want released." I won’t say more about either of these response – they just don’t deserve to be commented on. When I countered that as a credentialed (invited) member of the press I needed the information to accurately report what was presented and that this was a form of note taking, I was informed "If I let you do it then everyone will want to do it."

From what I could tell - 75-80% of this conference was being videotaped by an outside service. When I asked one of the employees of the service how the material they were capturing was going to be used, they said they didn't know. I did not see any place on-site where CDs/DVDs could be purchased and as of today there is nothing on the web site to indicate that this material is/will be available for purchase.

In addition to the general frustration of not being able to do my job, these restrictions reinforce my concern about the accuracy of some of the data I've seen in on-line reports that appear to be slightly altered regurgitations of Press Releases. For one of the EULAR presentations, I noted a discrepancy in what was contained in the slides the presenter sent to me post conference (at my request) and the data contained in several articles posted on major medical news web sites. I asked the presenter for clarification to be sure that I was interpreting the data correctly. He informed me that the data in the Press Release (the obvious source of the online articles) was not exactly correct as it was taken from two different reports. This is not the first time I've encountered this problem and I'm sure it will not be the last. Often Press Releases are written from the data contained in the abstract (which can be as much as 6 months old) vs what is actually presented during the conference session.

I agree that although it is an interesting approach, using the Americans With Disabilities Act, is not the way to go. Somehow we need to convince the societies that: (1) they should be concerned about the quality of the information that comes out of their conferences; (2) giving the press privileges that other attendees don't have is a perfectly acceptable practice; (3)as you noted - facilitating the free flow of information is the right thing to do.

Feel free to post this if you like.

I'd love to hear similar horror stories from other reporters at other medical meetings. Let's compile a list of medical societies that pretend to welcome reporters, but in fact have policies that make it extremely difficult to cover their conferences.

Wednesday, June 11, 2008

The American Diabetes Association: A Rant (Updated)

The American Diabetes Association (ADA) is a fine organization, providing important services to the diabetes community, funding critical research, and organizing several fine annual conferences, including their huge and recently concluded 68th Scientific Sessions in San Francisco.

And the ADA hosts a well-run newsroom at this meeting every year. They provided those of us covering the meeting with a comfortable place to work, wireless and wired broadband Internet access, and even tasty and free breakfasts and lunches every day. The red-shirted ADA staffers in the news room were unfailingly cheerful, polite, and very, very helpful.

It's too bad that some of the Association’s misguided policies virtually ensure that a great deal of the coverage of the many important studies presented at this meeting will be incomplete and inaccurate.

Take a look at their news room policies. Videotaping is prohibited. Photography is prohibited in oral and poster sessions. And in an addendum to these policies, handed personally to each news room registrant, they added audio recording --- audio recording! --- to the list of prohibitions.

In fairness, these restrictions apply to all attendees, not just the news media. They were widely ignored by reporters and other attendees. But in at least one large session a security guard bellowed a warning that if he caught anyone using a camera it would be confiscated.

I suppose we should feel grateful that they don't prohibit paper and pencil. If they took this one, small, additional step all of our stories would look something like this:

Diabetes Is Bad for You; a Drug May Help

San Francisco--Researchers at a university somewhere in North America have concluded that diabetes has certain negative consequences for the people who have it. Fortunately, a new drug may help. In a study of a bunch of patients with one of the forms of diabetes, this drug, having a name beginning with the letter R, appeared to help them in one way or another. The investigators said, however, that more research was needed.


Many of the reporters in the news room expressed annoyance at the irritating restrictions on photography and audio recording. These restrictions were especially galling given that for $200 or so anyone could purchase audio recordings of the entire conference, available on a DVD or online. Many of us would gladly have spent the $200 for these presumably high quality professional recordings. Problem is, they're not going to be available for two weeks. We’re in the news business. In two weeks it's not news, it's olds!

Oh, and guess who's selling those professional recordings. Well I’ll be a monkey's uncle, it's the ADA itself! Could it be that they prohibit audio recording to protect their monopoly? Say it ain't so, Joe.

If this isn't the motivation for these restrictions on reporters, I don't know what is. Are they afraid that results will be reported prematurely? Well then, they shouldn’t make recordings available at all and, for that matter, they shouldn’t publish their abstract volume and they should confiscate all writing material at the door. Hell, they should just cancel the meeting and stay home.

To be fair, the ADA is not the only society that imposes similar restrictions at its annual meeting. I've never understood these restrictions. Don't they want us to report the science accurately? Unless you have training as a court reporter and have learned how to use a stenotype machine, it simply is not possible to take notes fast enough while at the same time trying to understand the science and to evaluate its newsworthiness. (And if reporters started lugging stenotype machines around, some societies would probably prohibit those as well.)

It's especially hard if you’re working for a publication that isn’t afraid of printing actual numbers in its articles. You just can't get all of those numbers in your notes, and often the speaker doesn’t even recite them so they're not even in the audio recording; they're only on the PowerPoint slides. And the only sure way to get those numbers is to photograph the screen with a handy digital camera.

I would love to hear the ADA's rationale for these restrictions, and I'll be sending a link to this post to ADA media representative Colleen Fogarty (703-549-1500 ext. 2146 or for a response. I'll let you know what she says.

Meanwhile, I think that an enterprising reporter could make an argument that such restrictions violate the Americans with Disabilities Act. Carpal tunnel syndrome and other wrist maladies are among the common occupational hazards of the journalism profession. (“Ink-stained wretches” is an anachronism. “Wrist-wrecked wretches” would be more apt these days.) It seems to me that audio recording and photography could be seen as “reasonable accommodations” (a term of art in the Disabilities Act) for someone whose disability prevents her from taking legible notes fast enough to do her job.

It seems to me that the American Diabetes Association, many of whose members are disabled, shouldn’t be discriminating against those of us with disabling wrist injuries.

But, you know, no one should have to make that argument. The ADA should permit reporters to use the tools of their trade not for fear of a lawsuit and bad publicity, but simply because facilitating the free flow of accurate scientific and medical news is the right thing to do.


I had the following brief email exchange with Colleen Fogarty of the ADA:

June 11, 2008


I'm a medical reporter and the anonymous author of the Medical Conference Blog ( Recently I wrote a blog post that praises the ADA and its news room staff, but criticizes certain of the ADA's news room policies. You'll find that specific post at

I hope you'll take a look at it and consider a response. I'll promise to post your response in full.

Best wishes,


On June 12, 2008 she responded:

Hi Roueche,
If you would like to talk to Diane Tuncer, our managing director of Communications, please feel free to call her directly at 703-549-1500, ext. 5510.
However, respectfully, we would like you to share your identity so myself (or Diane) can know to whom we are speaking with.
Thank you,
Colleen Fogarty
Specialist, Communications
American Diabetes Association
1701 North Beauregard Street
Alexandria, VA 22311
703-549-1500, ext. 2146
703-549-6294 - fax

And on 6/12/2008 I responded:


Respectfully, I decline to share my identity. Among the ADA's objectionable media policies are explicit threats to ban reporters who violate your policies -- and their organizations -- from covering future meetings. I'm not willing to take that risk.

I hope you and Ms. Tuncer will visit my blog and comment on my criticisms anyway. I believe these criticisms are valid regardless of who I am and what organization employed me to cover your meeting.

If you believe the ADA has a good reason for restricting photography and audio recording by reporters, I'd love to hear it. Such a reason is not articulated anywhere on the ADA web site, or in the press kit, as far as I can tell. Or maybe my arguments were so persuasive that you've decided to change the policy. I'd especially love to hear that.

By the way, my post on the ADA meeting has generated more visitors than any other post on my blog, with one exception ( Try googling "American Diabetes Association news room" (without the quotes). You'll find my ADA post among the first page of results.



I've heard nothing since.

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