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.


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