New federal caregiver database full of holes

Tracy Weber and Charles Ornstein are still working with databases of disciplined caregivers, this time exposing gaping holes in the federal database released to hospitals on March 1 (LA Times version | ProPublica version). Weber and Ornstein trace the holes to a lack of reporting by state agencies, and mention California, South Dakota, New Hampshire, Alabama, Delaware, Ohio, Tennessee, Indiana as states whose database entries were demonstrably incomplete. Some states don’t even have a single disciplined caregiver showing up in the federal database even though scores of offenders are listed on those states’ own sites.

The omissions took federal health officials by surprise. Only last month, a spokesman for the agency that oversees the database told reporters that “no data is missing.” Another official said the agency had been “constantly” checking its data against state licensing board websites.

But Friday, the head of the Health Resources and Services Administration (HRSA) acknowledged that records were missing. She said her agency had launched a “full and complete” review to determine what is wrong and how to fix it.

The Department of Health and Human Services has reacted swiftly, Ornstein and Weber report. HHS boss Kathleen Sebelius sent U.S. governors a letter requesting that they identify and correct any holes in the federal database by June 1, at which point any states whose entries were not updated will be named and shamed in an HSS report. HHS will train state staff in compliance and audit the database to make sure everybody’s following the rules. States have, as of yet, not faced any penalties for failing to update the list over the preceding two decades.

Problem nurses move from state to state

ProPublica’s Charles Ornstein and Tracy Weber have, with the help of the Los Angeles Times‘ Maloy Moore, released the final installment in their nurses series (full series: ProPublica | LA Times), this one focusing on how “caregivers with troubled records can cross state lines and work without restriction.” They found that a large number of these cross-state issues could be prevented if state regulators took advantage of readily available information.

By simply typing a nurse’s name into a national database, state officials can often find out within seconds whether the nurse has been sanctioned anywhere in the country and why. But some states don’t check regularly or at all.

The failure to act quickly in such cases has grave implications: Hospitals and other healthcare employers depend on state nursing boards to vouch for nurses’ fitness to practice.

The reporters found an army of examples, from the disturbing anecdote they lead with to the 117 California nurses whose licenses had been revoked, suspended, denied or surrendered elsewhere or the 10 nurses who were disciplined in Rhode Island, yet operated with clear licenses in neighboring Massachusetts.

Most of these transgressions are recorded in a federal database, as well as in one operated by the National Council of State Boards of Nursing. Both are incomplete, even though states are required to update the federal database within 30 days of a disciplinary action. And the federal database, while more complete, is rarely used, probably because it costs money while the state boards’ database is free. Some states only check these databases when licensing a nurse the first time, others rely on the nurses themselves to disclose their own problems. A handful check their nurse list against the database regularly, but they appear to be in the minority.

Health care reform for the young and healthy

As part of the ProPublica Eye on Health Care Reform blog’s ongoing “What Health Care Reform Means For…” series, reporters Sabrina Shankman and Olga Pierce considered how the Senate and House reform bills would effect young, healthy, independent Americans. Here are a few highlights from their piece:

• They’ll no longer have the option of going without insurance (unless they’re willing to incur a penalty).
• They’ll get to ride their parents coverage until age 26 or 27, depending on which version you’re looking at. At present, it doesn’t last much past 19.
• The poorest may be eligible for Medicaid, even if they don’t have kids.
• In the Senate version, they’d also have the option of bare-bones coverage until age 30.

GE uses UK libel law to silence Danish researcher

Following in the footsteps of several other device manufacturers and medical interests, GE Healthcare is using UK libel laws, which some describe as “draconian,” to attempt to muzzle a Danish physician who helped discover links between the GE drug Omniscan and the debilitating and sometimes fatal disease nephrogenic systemic fibrosis.

ProPublica’s Jeff Gerth, who has been all over the Omniscan story for a while now, reports in The Sunday Times (and on ProPublica) on the lawsuit and the science, economics and politics behind it. The prominent Danish researcher, who noticed the link after a number of his patients came down with NSF, delivered a 15-minute PowerPoint presentation in Oxford in 2006 in which he referred to Omniscan as a potential “medical hurricane.” To date, GE has spent more than $600,000 fighting the claims with a libel suit.

Temp agencies a haven for problem nurses

Calling it a “free-wheeling, $4-billion industry” fueled by the nation’s chronic nursing shortage, ProPublica reporters Tracy Weber and Charles Ornstein take on the firms that supply temporary nurses to American hospitals (Los Angeles Times version here). In the story, the reporters say they “found dozens of instances in which staffing agencies skimped on background checks or ignored warnings from hospitals about sub-par nurses on their payrolls. Some hired nurses sight unseen, without even conducting an interview.”

Although the healthcare system as a whole is increasingly regulated, the nurse staffing industry remains a Wild West. No one knows how many agencies exist nationwide; estimates range from 3,000 to 6,000.

Ornstein, AHCJ’s president, and Weber found plenty of cases to back up that ‘Wild West’ impression. In some cases, firms shift problem nurses from hospital to hospital as trouble arose and, even when a nurse was tossed from one temp firm, he or she usually had no problem finding work at another. Nurses were hired with criminal backgrounds and licenses that were revoked in other states. They often allow employees to prove their “competency” through online tests, and are sometimes fly-by-night operations run by people with no prior nursing experience.

In the end, the reporters found that while there is a clear divide between the best and worst temporary nurse staffing organizations, it’s not always easy or possible for hospitals to figure out which is which.

Calif. adopts strict rehab rules for medical workers

ProPublica reporters Tracy Weber and Charles Ornstein have filed a report (Los Angeles Times version, ProPublica version) on the fallout from their work exposing failures in California’s nurse rehab program.

The state has adopted strict new rules governing drug abusers in the health care industry, requiring that those in the rehab program be tested more than 100 times in the first year, and pulling them from practice immediately should a relapse be detected.

In addition, public Web sites will now list any restrictions to their licenses, “easing the long-standing confidentiality protections that have shielded participants and kept their patients in the dark.”

Tribune investigates nursing home psychiatrist

In the latest installment of the Chicago Tribune’s investigation into Illinois nursing homes, Sam Roe and ProPublica’s Christina Jewett investigate Dr. Michael Reinstein, an impressively prolific prescriber who, in 2007, wrote more prescriptions for clozapine (”a potent psychotropic medication that carries five ‘black box’ warnings”) than all physicians in Texas put together.

In that same year, he prescribed medications to 4,141 Medicaid patients. Furthermore, while the average American doctor sees about 35 patients each with, Reinstein sees an incredible 60 patients each day. Reinstein’s workload may have something to do with the fact that he’s the psychiatric director at 13 different nursing homes, but Roe and Jewett write that the ultimate blame lies on systemic problems in Illinois.

Earlier

• 600-plus Ill. patients drugged without consent
• Trib looks into dangerous nursing home residents

ProPublica: How will reform apply to individuals?

Olga Pierce, one of the keepers of ProPublica’s Eye on Health Care Reform page, is starting a series on how health care reform will specifically affect certain groups of people. Her first installment considers the plight of the uninsured and unemployed. Using a 41-year-old unemployed secretary and single mother from California as her example, Pierce shows how the maze of tax penalties and subsidies would play out at the ground level.

Pierce got the Californian’s story from ProPublica’s “How (if at all) has the health care system failed you?,” a survey which was created in collaboration with American Public Media’s Public Insight Network. The Public Insight Network is a database of about 70,000 people who have agreed to allow American Public Media to ask for their advice and insights on certain stories.

We have public options now. Are they any good?

ProPublica’s Sabrina Shankman reviews America’s existing “public options” for health care, finding mixed results and limited utility. In addition to Medicare and Medicaid, Shankman reviews a few less prominent institutions:

• The armed forces Tricare plan: Covers all active members of the military, retirees and their families, regardless of preexisting conditions. If you stick to military treatment facilities, it’s cheap.



• Veterans Health Administration: Veterans who meet its standards are guaranteed high quality care, but funding is tight at the VA right now.
• Indian Health Service: Allows American Indians and Alaska Natives free access to reservation clinics… until the service’s funding runs out, as it does about halfway through each year.
• Healthcare Group of Arizona: It was founded to provide afforable insurance to certain small businesses, but a lack of funds and climbing deductibles mean that many employers will be better off looking to the private market anyway.

Reuters has a handy summary of the key provisions of the latest bill likely to be considered by the House of Representatives.

Autism news raises question: When is an embargo not an embargo?

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.

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