Hoban reports on uneven H1N1 death disclosure
Filed under: Health data, Health journalism, Hot Health Headline, Public health
WUNC reporter and AHCJ member Rose Hoban put together a story about uneven disclosure of H1N1 deaths by public health officials and the possible benefits and risks of providing more information. In the end, Hoban reported, it comes down to balancing individual privacy and the public interest.
On the official side, Hoban spoke to Megan Davies, M.D., North Carolina’s epidemiologist, who referred to the lack of a “compelling public health need” to provide H1N1 death data on a county-by-county level, pointing out that in many areas it would be easy for locals to take that information, match it with recent death records and come up with the name of the infected person. Davies said that, in cases like that, she fears the infected person’s family would be stigmatized.
“The fear of contagion’s a really primitive thing that comes up in people,” Davies said.
Additionally, Hoban says, officials are bound by medical ethics, state laws and federal health privacy regulations (which, she notes, generally don’t cover people who are already dead).
For another perspective, Hoban spoke with AHCJ board member Felice Freyer of The Providence Journal. Freyer discussed AHCJ’s report that disclosure had been uneven across the country, and said that officials should share information unless there’s a compelling reason not to.
“Public health officials can’t do their job if they don’t have the trust of the public and no-ones going to trust them if they hide information for no reason,” Freyer said.
Former CDC lead legal counsel Gene Matthews agreed, noting that “Too little information can be a bigger headache than too much.” According to Matthews, this problem has been exacerbated by the Internet where, “If the public health officials don’t provide enough information, the outsiders will simply make it up.”
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 them, 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.
House reform bill includes serious disclosure rules
Filed under: Health care reform, Health data, Health journalism, Health policy, Hot Health Headline, Member news, Pharmaceuticals
The health care reform bill to be considered by the House of Representatives (1018-page pdf) includes strict disclosure requirements regarding “financial relationships between manufacturers and distributors of covered drugs, devices, biologicals, or medical supplies under Medicare, Medicaid, or CHIP and physicians and other health care entities” (see “Physician Payments Sunshine Provision” on pages 635 through 653).
All such entities would be required to file annual disclosure reports. Exemptions include investments, goods intended for charity care, short-term equipment loans and payments or transfers of value of less than $5.
Sunshine Week may drop employee, fundraising
Filed under: Health journalism, Hot Health Headline
Clint Hendler reports in the Columbia Journalism Review that Sunshine Week’s only full-time coordinator will likely lose her job soon.
Photo by **Mary** via Flickr
The media-sponsored weeklong push for open government will be put together on a part-time basis by an employee at the American Society of News Editors. Sponsors hope the event has gained enough momentum to keep going with less intensive planning and organization and more reliance upon volunteer efforts.
The Knight Foundation grants that kept the event going since its 2005 inception have run their course, and a major fundraising push raised only $471,600 of a planned $2.5 million towards a permanent endowment. The Knight Foundation will match any funds raised. According to Hendler, the disappointing totals have led ASNE to pull resources out of fundraising efforts and instead devote them to keeping Sunshine Week going.
Dental malpractice suit shows gaps in information
Filed under: Government, Hot Health Headline, Public records
A web of confidentiality, state politics and gag clauses conspired to conceal a malpractice case settled in 2005 by Dental Board of California President Dr. Suzanne McCormick, the Los Angeles Times‘ Michael Rothfeld found.
McCormick paid a 13-year-old boy’s family $95,000 after she mistakenly removed two permanent molars from the boy who was actually supposed to have his wisdom teeth taken out. McCormick was first appointed to the dental board post in 2006; the office of the governor reappointed her for a second four-year term in March.
The foundations for sweeping the malpractice suit under the rug were laid in 2005, when McCormick obtained a “gag clause” as part of the settlement. The clause prevented the boy’s lawyer from filing a complaint with the very dental board she would soon become a member of, and thus reduced her chances of being formally disciplined for the mistake.
Such gag clauses are illegal for medical doctors in California, but Gov. Arnold Schwarzenegger has twice vetoed attempts to extend the prohibition to other professions. The dental board itself reviewed the case, but after an outside consultant contacted McCormick (but not the victim or his family), decided no punishment was in order. Cases in which such punishment is not deemed necessary are kept confidential by the board.
Rothfeld’s sources call for greater freedom of information and transparency from such state boards and an end to the gag clauses that are used “to short-circuit the regulatory process that protects the public.”
Canadian hospitals won’t reveal quality measures
Michael Millenson of The Health Care Blog writes that, for a report card comparing Ontario hospitals, most hospitals simply refused to participate.
Last year, the first for the report, just 43 of 136 acute-care hospitals agreed to participate. This year, though, the number of participants plunged 60 percent, to just 17 hospitals, according to a story in Healthcare IT News.
As Nadeem Esmail, director of health system performance studies at the institute and co-author of the report, pointed out, “By refusing to be identified, Ontario hospital administrators are hiding vital information from Ontario taxpayers and patients about the quality of tax-funded healthcare provided in their community.”
Millenson asks, “if it’s taxpayer money, why doesn’t your government require hospitals to report?”
New FOIA guidelines encourage transparency
U.S. Attorney General Eric Holder issued a memorandum (PDF) that directs all executive branch departments and agencies to apply a presumption of openness when administering the Freedom of Information Act.
The guidelines state that “an agency should not withhold information simply because it may do so legally” and that when “an agency determines that it cannot make full disclosure of a requested record, it must consider whether it can make partial disclosure.” Holder emphasizes that everyone in the federal government is responsible for effective FOIA administration, not just an agency’s FOIA staff.
The memo addresses online records and data as well: “Accordingly, agencies should readily and systematically post information online in advance of any public request. Providing more information online reduces the need for individualized requests and may help reduce existing backlogs.”
The memo specifically “rescinds the guidelines issued on Oct. 12, 2001, by former Attorney General John Ashcroft.”
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Health Journalism 2010, AHCJ's annual conference, features a world-class program with story ideas, sources, stronger reporting skills, chances to meet newsmakers and network with other journalists.
- Health and education: Covering these intersecting beats
- Reporting on the business of health care
- Health reporting resources for journalists on state and local government beats
- Shortened Lives: How location, lifestyle affect health
- Covering a complex story for the long haul
- Aging in the 21st Century: Presentations and tip sheets
- AHCJ calls for better information from Joint Commission Web site
