A ripe old mess on autism and milk- and wheat-free diet study embargo
Nearly three months into the life of Embargo Watch, I shouldn’t be surprised by now that what seem like simple embargo incidents are anything but, once I start to peel back the layers of the onion.
Still, when Katie Hobson sent me a message on Twitter yesterday around 3 p.m. Eastern about coverage of a study whose embargo she thought wasn’t lifting until 4, I figured it was a simple embargo break. After all, the study involved autism, and I remembered what happened last October when the Centers for Disease Control and Prevention and the journal Pediatrics embargoed data on the rate of the disorder.
In a Friday press conference, the Department of Health and Human Services discussed, under embargo, highly newsworthy data indicating a much higher than expected prevalence of autism in the United States. HHS didn’t mention, however, that in an earlier call it had already given the most newsworthy part of that information to members of the “autism community,” and had not restricted them from publishing the info.
Members of that community wasted no time doing so, as Covering Health reported, while the mainstream media sat on their hands, abiding by the Monday morning CDC and Pediatrics embargoes — and getting slammed on the Huffington Post for it.
The study Katie wrote me about yesterday was being presented at the International Meeting for Autism Research. It found that eliminating milk and wheat from the diets of children with autism “does not appear to help children with autism, but early behavioral treatments do,” as my colleague Maggie Fox reported.
When I looked more closely at the coverage and the press releases that preceded it, however, I didn’t see any evidence that anyone but a few mainstream media outlets had covered it. There were no stories by autism bloggers.
Katie forwarded me the official press materials from the meeting, which had 4 p.m. stamped all over them. She had also confirmed that embargo time from Dana Marnane, national director of communications and marketing for Autism Speaks, a major sponsor of the conference.
Then I emailed Heather Hare, assistant director of public relations at Golisano Children’s Hospital, part of the University of Rochester Medical Center, home to the researchers who did the study. They had put out an embargoed press release which was at that point public, despite the apparent 4 p.m. embargo.
It turned out that Rochester thought the embargo was lifting at 2 p.m., because that’s when the press conference announcing the results was — and because, she says, someone else involved in press for the conference had told them so. (I have an email into that person but want to confirm first.) But Autism Speaks’ Dana Marnane didn’t know that, according to an email she sent Katie in the meantime. Dana said she didn’t know about the Rochester release until it went live at 2.
As if that weren’t complicated enough, it turns out that someone — Fox News — did actually break the embargo, even if it was at 2 p.m. Heather — whom, I should mention, apologized profusely in her email exchange with me about Rochester’s role in the confusion — said that Fox ran a story sometime before 1 p.m. Eastern, and took it down after she contacted them.
Got all that?
I think I do, and my takeaway is that there were a lot of perfectly well-intentioned PR people doing what they thought was right.
But that’s the problem: There were too many people doing too many things. There are people from three different organizations listed as media contacts on the conference press page. Then there was someone working for a university press office.
Not that I can assume any of those people have ever read Embargo Watch, but we’ve seen this movie already, two weeks ago at the American Society of Hypertension meeting. There, one PR agency was managing press for the society, while at least one other was managing press for a company that released embargoed material related to a conference presentation.
That post prompted a comment from longtime Ohio State University public information officer Earle Holland — who has a blog you should check out too, by the way:
That’s why we refuse to do joint news releases with other institutions — ultimately, nobody is in charge and nothing is really agreed on!
Earle’s a very smart and well-respected guy, for many reasons. While strictly speaking there weren’t any joint releases here, the same principle should probably apply to any event where several different people are putting out their own releases. It happens with lots of major studies, usually without a problem, but these conference anecdotes are a cause for concern.
Unless the point is mass confusion, in which case the plan is working.