Feds take Columbia to task over decade-old study
Filed under: Conflicts of interest, Health data, Hospitals, Hot Health Headline, Nursing, Pharmaceuticals, Studies, Tools
The run of intriguing health journalism from the Huffington Post Investigative Fund continues this week, as Jeanne Lenzer and Shannon Brownlee look at the federal government’s entrance into an internal conflict at Columbia University’s medical center over the legality and morality of a heart-related study that took place from 1999 to 2001, one in which some experts say it was “virtually guaranteed” that some patients would suffer hemorrhaging.
Columbia has already conducted three internal investigations on the matter. Now, the federal government has asked for a full account of what happened to the study’s participants and ordered that Columbia write a letter to the study’s participants and disclose the “true nature” of what some contend was a deceptive study.
NOTE: In addition to the story itself, the reporters have posted a selection of key documents online.
Lenzer and Brownlee explain that the study went wrong when participants (some of whom were “Spanish-speaking patients who lived in low-income neighborhoods near the hospital”) “were not told that they could be given high doses of the fluids or that they faced a risk of serious bleeding.” Then, despite protests from hospital doctors that patients hadn’t been informed of what were serious possible health risks, the local Institutional Review Board allowed the study to continue. This was followed by years of internal fighting, and finally capped by the HHS’ Office of Human Research Protections entrance into the fray.
HuffPo: EMR cost estimates involve ‘fuzzy math’
Fred Schulte, writing for the Huffington Post Investigative Fund, worked to understand the math needed to attach a $19 billion cost estimate to an electronic medical records program with a $30 billion to $45 billion price tag. The difference will theoretically be made up by the billions of dollars saved by the resulting reductions in federal health care spending, but Schulte talks to experts who say there is no concrete evidence that these hypothetical savings will ever occur.
An example:
Steve Findlay, a Consumers Union health policy analyst who sits on a federal advisory panel on electronic medical record standards, agreed that “nobody knows” whether savings will be realized. “I think that everybody ought to stop guessing at how much money we will save. There’s no way to know,” he said. “It’s an impossible calculation. Everybody should stop trying to predict it.”
In other words, folks should think twice before quoting the administration’s $19 billion estimate. At this point, trying to guess any number other than actual cost is an imprecise exercise fraught with peril.
Autism news raises question: When is an embargo not an embargo?
Filed under: Government, Health journalism, Hot Health Headline, Public records, Studies
Are embargoes yet another quaint tradition that, like so many before it, has been pushed into obsolescence by the weight of the Internet? Do so many people have access to so much information they can share so easily that artificial restrictions on publication are meaningless?
Consider: 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. The incident raises serious questions about giving special interests privileged access to data at the expense of major media outlets, as well as the validity of embargoes in an era of increasing media fluidity.
Routine embargo?
Friday, at 3 p.m., HHS held a press conference announcing (among other things) that according to a CDC study, the prevalence of autism spectrum disorders, previously thought to be about 1 in every 150 children, is actually closer to 1 in every 100 children. This news, big enough that it led Monday’s health coverage, was embargoed until Monday because it reached conclusions similar to Health Resources and Services Administration (HRSA) findings that would be published in the journal Pediatrics that day.
There is some confusion as to where the embargo originated, as a Pediatrics representative said the journal only enforced an embargo of the HRSA study, and that anybody could have published the results of the CDC study. We are still awaiting a CDC response and more information from AAP, but have talked to representatives of the National Institute of Mental Health (NIMH) and this much, at least, is clear: As applied, the embargo covered both studies and every bit of data released to journalists. It was not, however, applied to information about the CDC study released in the autism community call.
“Both the CDC overview and the HRSA study were embargoed, because the subject nature was obviously so similar,” NIMH spokesman Jim McElroy said. “It just wouldn’t be appropriate to not have the CDC following the same set of guidelines as the HRSA study as it relates to the embargo.”
Special access for special interests
The 2 p.m. autism community call, a hastily organized affair for which invitations went out just hours beforehand, featured a brief appearance by HHS Secretary Kathleen Sebelius and gave autism advocates a broad overview of the CDC study, McElroy said. Because few specifics were discussed, the study’s broad conclusion (that the prevalence of autism spectrum disorders was now thought to be nearer to 1 in 100 children) was not under embargo.
McElroy again:
“The embargo was not in place for the advocacy groups but that’s why it was a far more general overview approach on the part of NIMH, HRSA and CDC… whereas with media it was clearly understood that an embargo was in place so media had the opportunity to ask questions.”
“The advocacy groups are very different by nature.. from media outlets whose job is to disseminate information. It’s two very different audiences and that’s why the embargo certainly is in place.”
In other words, the autism community got less information, but they were allowed to do as they pleased with what they got. The media, on the other hand, got much more information, but were not allowed to publish any of it, not even that part which had been given to the autism community without restrictions.
Autism advocates run with the news
Those on the “autism community” call wasted no time in running with the info they’d learned. For example, Dan Olmsted immediately posted the key stat on Age of Autism, and David Kirby posted a more thorough breakdown on Age of Autism and The Huffington Post soon after. About.com also posted the data (with a reference to the Pediatrics article, even), though it seems to have been taken down since (It’s still indexed in Google news).
Adventures in Autism blogger Ginger Taylor joined the call as well; her Friday post reveals a few key facts about the discussion.
“The conference call was not announced to the press or public, but merely in an e-mail sent out at 9 a.m. inviting around 50 people in the autism community (almost exclusively friendly to the administration) to the 2 p.m. call with a ’sorry for the short notice,’” Taylor wrote.
Journal doesn’t budge
Meanwhile, Pediatrics didn’t drop the embargo. In a brief call Tuesday morning Susan Martin, American Academy of Pediatrics’ director of media relations, said that stories like the Age of Autism and Huffington Post pieces hadn’t broken Pediatrics‘ embargo because they only reported on the similar study to be published by the CDC, and not specifically on the journal’s embargoed article, “Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007.” Martin did acknowledge that About.com had broken the embargo.
Readers take “tardy” media to task
The comments on Kirby’s Huffington Post entry show just how much of a debacle the embargo was for major media outlets. Readers didn’t understand the media’s hands were tied, they just knew that major outlets weren’t reporting on what looked like big news. Here are the most telling entries:
“Thanks to HuffPo for covering the autism issues that are being ignored by so many.”
–Theresa Conrick (Oct. 4)
“I sent this link to all TV news stations in our viewing area,both newspapers and the most popular Newstalk..…silence.”
–KFuller (Oct. 4)
“Stakeholders are just crying this weekend that no news source picked up this story. Thank you from the bottom of my heart Huffington Post and David Kirby.”
–TannersDad (Oct. 4)
The fallout: Do embargoes work anymore?
In the case of the bungled HHS autism release, mainstream outlets with explicit standards and institutional policies were hamstrung while less-established outlets nimbly skipped out front of a major story. It’s a somewhat unique situation that underscores the growing weakness of the embargo process.
Do embargoes work when they don’t apply to everyone equally? What about when they’re not followed by everyone? Is it “good enough” to keep mainstream media off the news while it multiplies with impunity throughout the blogosphere?
A related consideration: How big must an embargo-breaker be before everyone else follows suit? About.com, for example, gets more American traffic than any media outlet but CNN, ESPN and The New York Times and is the 27th most popular site among American Web users. It’s even owned by The New York Times Company, though the independently contracted “guide” who posted the news wasn’t under the control of the Times‘ editorial staff, of course. Despite all that, About.com still wasn’t considered influential enough to have killed the embargo.
Everybody needs to be under the same rules
AHCJ president and ProPublica senior reporter Charles Ornstein said that “If they’re going to be sharing information, it should be shared with the premise that everybody’s under the same rules.”
“I think it’s unfair to hold an embargoed briefing for the media and a non-embargoed briefing for advocates,” Ornstein said. “In a way, I think this punishes the media for abiding by embargoes in an era where information is easily shared by blog posts and by Twitter. When information enters the public domain, embargoes should be lifted.”
“While many people believe that embargoes play a vital role, events like this should cause us to make sure they’re fair to the media, and, even more than that, ask whether they help or hinder the process of conveying information to our readers, viewers and listeners,” Ornstein said.
UPDATE: Pediatrics explains why they didn’t lift embargo
Having made clear that the organization’s embargo only extended to the HRSA study, and not the CDC study discussed on the autism community call, the AAP’s Susan Martin provided AHCJ with the following statement:
The American Academy of Pediatrics (AAP) was notified of an embargo break by About.com on Saturday, Oct. 3, by a journalist for another news organization. The AAP evaluates embargo breaks on a case-by-case basis. In the About.com case, the AAP denied a request to lift the embargo early. Lifting the embargo over the weekend would have only added to the confusion, especially as the About.com post was removed as soon as the reporter learned she had broken the embargo, and many journalists had scheduled their news reports on the study to run Monday, Oct. 5.
In a similar vein, the just-distributed Pediatrics‘ media mailing for the Oct. 12 issue contained an “Editor’s Note” laying out the terms of AAP embargoes and reminding journalists of the sanctions the academy can impose upon outlets who violate those guidelines. The note also reminds folks that “Any decision to lift an embargo early is at the sole discretion of the AAP.”
UPDATE: CDC says no numbers were given to advocates
CDC spokeswoman Artealia Gilliard told AHCJ on Tuesday afternoon that everything in the 3 p.m. press call was under embargo, while nothing that would have been covered by that embargo was mentioned in the earlier call with the autism community. In particular, Gilliard said, no specific prevalence rate numbers were given out on the call.
“We basically said ‘On Monday, two studies will come out. They will update the prevalence estimate we previously had.’ … It didn’t actually have any of the information that was embargoed.”
Gilliard, who was on both calls, specified further: “I know they didn’t put out numbers in the advocacy call. I know we didn’t say 1 in 100. What we’ve been saying is ‘approximately 1 percent of children.’”
The difference between “1 in 100″ and “approximately 1 percent” is up for debate, but via e-mail, Adventures in Autism blogger Ginger Taylor outlined exactly how she and other autism-community bloggers were able to report the numbers without sitting in on the embargoed call: They’ve known them for a while.
Taylor first noted rumors of the new rate in a July blog post, David Kirby confirmed the rate and published conclusions of both the HRSA and CDC studies on the Huffington Post in August, and Tina Cruz noticed relevant changes to the CDC site late last month. So, even if the phrase “1 in 100″ was never uttered, those in the know were quick to connect the dots. Kirby confirmed this via e-mail, here’s an excerpt:
According to my notes for the community call, this is what Dr. Insel said:
“Preliminary analyses indicate an increase in estimated prevalence, to around 1% of children affected.”
1%, obviously, is 1 in 100.
Cruz also notes in the comments on this post that she noticed changes to the numbers on the CDC’s Web site.
So, while the cat may already have been out of the bag, the CDC did not release embargoed information on the autism call because, Gilliard said, “There’s no such thing as embargo with the general public. The only people who respect embargoes are journalists.”
In the autism advocate call, Gilliard said the CDC carefully walked the line between respecting Pediatrics‘ embargo and alerting parents and advocates to the upcoming changes as soon as possible.
Parikh: HuffPo + Northrup = half-baked story
Filed under: Health journalism, Hot Health Headline
In a continuation of his critique of the Huffington Post’s health coverage, Dr. Rahul Parikh chastises the online news outlet and Oprah Winfrey favorite Dr. Christiane Northrup for a story Northrup posted trumpeting the “paradigm shift” brought about by the “exciting new” findings of what seems to be a 2006 study that showed large doses of vitamin D might decrease the risk of developing breast cancer. She called the study “preventative medicine at its finest.”
Parikh notes that while the study cited by Northrup does appear to support her claims, it was an observational study inconsistent with later research. Furthermore, the doses of vitamin D given in the study were twice the recommended allowance, thus increasing the risk of kidney-and-bone-damaging overdoses.
Parikh also questions Northrup’s recommendation that women “can even visit a tanning salon that offers UVB tanning rays,” for reasons which should be all too obvious.
HuffPost starts investigative reporting fund
The Huffington Post is launching a fund that will support investigative reporting. The initial budget of $1.75 million is expected to pay for 10 staff journalists who will coordinate stories with freelancers.
Arianna Huffington (Photo: JD Lasica, socialmedia.biz (CC))
Arianna Huffington, co-founder and editor-in-chief of The Huffington Post, said concern over the layoffs at newspapers hurting investigative journalism prompted the move. She hopes to hire laid-off journalists for the project.
Work that the journalists produce will be available for any publication or Web site to use at the same time it is posted on The Huffington Post, she said.
The first topic the journalists will be expected to delve into is the nation’s economy.
The Huffington Post skews liberal, but its founder promised that the work done by the investigative fund would be nonpartisan. The group would be discredited quickly if it puts out faulty information, said Nick Penniman, the fund’s executive director.
“We care about democracy, not Democrats,” he said.
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