‘Main Street’ informed, skeptical on health reform
In her blog on CJR.org, AHCJ Immediate Past President Trudy Lieberman updates what is becoming an annual franchise: Her summer man-on-the-street column gauging popular opinion on health reform. Just like last year, Lieberman found her subjects on the streets of Columbia, Mo., a town that’s about as close to the (population) center of the United States as you can get.
The common thread? Missourians were pretty sure health care reform wasn’t all it was cracked up to be, but still weren’t willing to vote “yes” in the state’s referendum on opting out of the individual mandate.
Lieberman added a concrete dimension to her main street opinions by prying details on income and expenses from her sources, numbers and ideas which she then used to link their stories to the larger themes surrounding reform implementation.
Keep an eye out for part two of the column, which should be coming soon.
Hospitalist: What health journalists should know
R. W. Donnell, an Arkansas hospitalist with a long-running blog and a few burrs in his saddle, has outlined what amounts to an exam for health care journalists. It’s based on the assumption that journalists should have some prerequisite knowledge before tackling difficult scientific issues. But, instead of just grumbling about the “lay press,” the man who calls himself “Dr. RW” takes the next step and actually writes the first draft of such an exam. As you might expect, it’s an eclectic document.
Photo by thegirlsmoma via FlickrMost of the questions address specific pieces of scientific knowledge and vocabulary, presumably the bits that Donnell has found to be most difficult for journalists, including:
- Scientific method
- DNA vs. RNA
- Define and distinguish: humoral immunity, cell mediated immunity, innate immunity, acquired immunity
- Describe Medicare’s prospective payment system and the financial conflict of interest it causes
Mixed in with the pop-quiz style questions are a few broader queries that seem to be staples of just about any AHCJ gathering, as they point to the fundamental dilemmas of the profession:
- Explain the hazards of examining scientific questions in the arena of public debate.
- Explain why scientific progress does not lend itself to sound bite reporting or “news of the day” journalism.
Likewise, there are others that should be familiar to any member who’s heard one of AHCJ’s leading voices deliver an introduction to health journalism:
- Define: relative risk reduction, absolute risk reduction, number needed to treat.
- Explain the difference between clinical significance and statistical significance in clinical trial results.
- Explain why consideration of biologic plausibility is important in the evaluation of health claims and why evidence based medicine often fails when biologic plausibility is not taken into account.
In the end, he admits that the list “is by no means comprehensive or even realistic,” and invites others to contribute. It’s a goofy mix of questions, but I’d be surprised if I was the only one who was mentally grading himself throughout the entire exercise.
Society ‘snookered’ by research that isn’t new
Peggy Peck of MedPage Today found that research presented as new at the European Society of Cardiology’s annual meeting this weekend was actually published in July, despite the society’s requirement that information submitted for presentation must be new, unpublished data.
When asked by MedPage Today to point out the “news” in the Hot Line presentation, STAR lead investigator Bodo-Eckehard Strauer, MD, of the Heinrich Heine University of Düsseldorf, Germany, said the news was that bone marrow cell therapy significantly improved survival in patients with chronic cardiomyopathy, which he illustrated with a slide showing a Kaplan-Meier curve – the same graph that was published in the July issue of the European Journal of Heart Failure. Moreover, every data slide in Strauer’s presentation matched the tables in the published paper.
Following questions from MedPage Today, the organization acknowledged its error and has announced the researcher will not be allowed to present at its meetings for two years. Roberto Ferrari, M.D., president of the society, said the research had been accepted for presentation because they thought it had new data but that “We were snookered.”
Gays excluded from clinical trials
Thanks to an awards announcement from the National Lesbian & Gay Journalists Association, we just noticed Jen Colletta’s story in the Philadelphia Gay News about the exclusion of gays from clinical trials. Colletta won an Excellence in News Writing Award. The exclusion of gays in clinical trials is an issue that hasn’t received much mainstream attention, apart from a letter from Colletta’s sources in NEJM, a write-up by Ed Silverman and a story in The Philadelphia Inquirer.
According to Colletta, the data behind the story grew out of a chance discovery by researchers at the Fox Chase Cancer Center in Philadelphia.
“We review all the different trials that are proposed here, and they don’t necessarily open here, but a lot of them are multi-center trials so we do look at them. And I saw that we had been looking at a number of clinical trials that explicitly excluded gay people, and they didn’t necessarily open at Fox Chase, but I started to become more attuned to this and realized that this is a bigger, national issue,” (Brian Egleston, assistant research professor of biostatistics at the center) said.
The researchers analyzed trials listed in the ClinicalTrials.gov database, maintained by the National Institutes of Health and the Food and Drug Administration.
In particular, Colletta reported, homosexuals are excluded from studies about couples, especially those dealing with erectile dysfunction, which are often related to treatments for prostate cancer. It’s entirely normal for a drug trial to have exclusion criteria, but an oversight in NIH regulations mean that the exclusion of homosexuals, unlike exclusion along racial lines, can be implemented arbitrarily.
In the mid-1990s, Congress mandated that NIH establish a set of guidelines that would prevent it from excluding minorities, such as women and African Americans, from federally funded clinical trials unless there was a significant reason. There are currently no such rules regulating the inclusion of LGBT individuals.
The distribution of exclusionary studies is particularly interesting. To put it in perspective, here’s a quick visualization of the data put forth in the NEJM letter:
Dissecting Gawande’s narrative structure
In a recent post, Not Exactly Rocket Science’s Ed Yong tried to break down Atul Gawande’s work and figure out why it can be so darn compelling. Yong and many thousands of others (myself included) were riveted by Gawande’s latest New Yorker piece, a treatise on palliative care.
Atul Gawande in action. Photo by Center for American Progress via Flickr.
It was a great read, but nothing shocking – much of it reminded me of sections of Gawande’s 2008 book, Better – and it clocked in at a mammoth 12,000 words. Yet, even in the age of bullet points and boldface, that didn’t stop anyone. Why?
Putting aside the fact that Gawande’s a wonderful writer who’s built a powerful brand for himself, Yong instead considered the power of Gawande’s narrative structure. It’s something I’ve noticed throughout the man’s work, and something that he can get away with as a prominent surgeon who writes for magazines: He saves the climax of his key anecdote (the patient’s outcome) for the end, and usually weaves it into several minor peaks and valleys in the course of the story.
These four sections are all obviously united by a common theme. But to hang together in a single feature, they need more than that. Gawande achieves this by using the tale of a terminally ill cancer patient, Sara Monopoli, to frame the four topics. It is obvious enough to use real-life stories to illustrate the theme of death and Gawande’s experience gives him plenty to draw from. But his critical move was to use a single story to frame all of the others.
Identical tubing demonstrates FDA’s inaction
In The New York Times, Gardiner Harris outlines the problem of medical tubing that looks very similar – leading to medical errors – then deftly works his way up the chain in an attempt to find the source of device regulator’s failure to solve a problem that seems entirely solvable.
Many medical device tubing looks the same, which leads to horrific mix-ups like the delivery of food straight into the bloodstream. In 2007, The Wisconsin State Journal’s David Wahlberg earned first place in the medium newspapers category of AHCJ’s Awards for Excellence in Health Care Journalism for his Medical Misconnections series, which detailed the same problems. He even wrote an AHCJ article teaching journalists how to investigate patient safety problems.
Photo by bennylin0724 via FlickrSince then, not much has changed. Which is not all that surprising, when you consider that not much had changed in the decades before Wahlberg’s story either. Harris’ mission is to dig past the finger-pointing and figure out why. In the end, it all seems to point to some remarkable systemic flaws in the FDA’s device approval system, as well as an unwillingness on the industry to change without the threat of brute regulatory force. In addition to compelling analysis, Harris punctuates each argument with a few spicy quotes.
You’ll have to read Harris’ story to truly understand the perversity of the FDA system and how its lent such inertia to the status quo, but here’s a sample:
Dr. Robert Smith, an F.D.A. device reviewer who left the agency on July 31 and was among nine agency employees who in 2009 decried the agency’s device approval process as illegal and dangerous, said that the tubing problem, which has gone on for decades, was another example of how the agency failed to protect the public. “F.D.A. could fix this tubing problem tomorrow, but because the agency is so worried about making industry happy, people continue to die,” Dr. Smith said.
And, from Nancy Pratt, a senior vice president at Sharp HealthCare in San Diego who believes that “Nurses should not have to work in an environment where it is even possible to make that kind of [tubing] mistake.”
“The regulators have been waiting for the manufacturers to come up with a solution,” Ms. Pratt said, “and the manufacturers won’t spend the money to design and produce something different until the regulators force them to. And now the international standards organization is taking forever to get the whole world onto the same page.”
Mass. won’t post hospitals’ death rates
Filed under: Health data, Hot Health Headline, Public records
The Boston Globe’s Liz Kowalczyk reports that, two years after it was first proposed by a consumer group, the Massachusetts Health Care Quality and Cost Council has decided it won’t publish hospital-wide mortality rates. The problem, it seems, is the lack of an accurate, universal method of computing such numbers.
Health and Human Services Secretary Dr. JudyAnn Bigby, who heads the group that made the decision, said current methodology for calculating hospital-wide mortality rates is so flawed that officials do not believe it would be useful to hospitals and patients and could harm public trust in government.
It appears, Kowalczyk writes, that general hospital mortality rates just aren’t “ready for prime time” quite yet.
The council convened an expert panel, which worked with researchers to evaluate software of four companies for measuring hospital mortality. The problem was that researchers came out with vastly different results when they used the various methodologies to calculate hospital mortality between 2004 and 2007 in Massachusetts, and they could not tell which company’s results — or if any — were accurate.
NAMC folds, qualified members invited to AHCJ
The National Association of Medical Communicators, an organization for medical broadcasters, writers, organizational spokespersons and health professionals who communicate with the public on a regular basis, has disbanded.
In a blog post about the decision, Barbara Ficarra, who was an NAMC board member and is a member of AHCJ, cites cutbacks from pharmaceutical sponsors and changes in the broadcast world. Ficarra, who says “I couldn’t walk away with trying to find a home for [NAMC's] members,” has suggested that people involved with NAMC consider joining AHCJ.
“We’re all sorry to hear about NAMC’s difficult decision to disband,” said Charles Ornstein, AHCJ’s president. “For those NAMC members who write or broadcast health news and still seek the camaraderie of a professional home, AHCJ is a terrific hub for networking, learning, sharing and friendship. We have broadcast members from throughout the country and are always looking to offer additional opportunities in this area.”
Ornstein encouraged journalists to check out AHCJ’s membership categories.
Under AHCJ’s new membership guidelines approved earlier this year, some, but not all, NAMC members could qualify for professional or associate membership. At the same time, the guidelines reinforce the prohibition on people who do public relations work or pitch stories to journalists.
Australia lagging in conflict-of-interest disclosures
Filed under: Conflicts of interest, Health journalism
When a country is holding up the United States as a model of progress on medical conflict of interest issues, you might suspect there are some serious systemic issues there. Such seems to be the case in Australia, based on Melissa Sweet’s recent post on the Croakey blog. At present, there’s little baseline research into industry funding and influence in Australia, though what little there is seems to indicate a situation similar to what we’ve found in the United States. The lack of research seems to stem from a lack of awareness and perhaps even indifference.
Photo by acediscovery via FlickrThe catalyst for this post seems to be the Walkey Media Conference, a media industry confab sponsored by the national journalists’ union that generated a bit of controversy thanks to a sponsorship from Exxon Mobil.
Sweet found a University of Sydney seminar in July that was to look at conflicts of interest to be less than packed, and inferred that Aussie “academics seem to regard (COI) as irrelevant, tedious or confronting.” Furthermore, she wrote, “Australian universities are dragging the chain in dealing with their staff’s conflicts of interest, at least compared with institutions in the US.”
The post makes a strong, well-researched case for COI disclosure and serves as a sort of roundabout compliment to the dogged American journalists (we’re looking at you, John Fauber) who are creating mainstream awareness of conflicts of interest.
AHCJ pushes for access to publicly funded research
Filed under: Government, Health data, Health journalism, Public records, Studies
The strong public interest in “direct, free and full text access to research articles” prompted the Association of Health Care Journalists to send comments to the House Oversight and Government Reform committee.
The letter [PDF] was in support of full-text access to the fruits of publicly-funded research to members of Congress considering H.R.5037 – Federal Research Public Access Act of 2009. One section of that bill would require researchers who receive funding from federal agencies to provide free online public access to final peer-reviewed manuscripts or published versions as soon as practicable, but not later than six months after publication in peer-reviewed journals.
While AHCJ did not take a position on the specifics of the bill, the group highlighted the strong public interest in “direct, free and full text access to research articles,” noting that for journalists to be able to provide readers and audiences with accurate and comprehensive reporting, they need to be able to see the full details of research reports, not merely the highlights contained in abstracts or news releases.
“The fundamental principle at issue is the public’s right to examine both the evidence produced by research studies and the methods employed by researchers. When the researchers are supported by taxpayers, the public’s claim is even stronger,” AHCJ’s statement read in part.
The statement took note of the concerns of some publishers who fear the mandate could cut into their income, while also pointing out that other publishers already provide free online access to the full text of research articles within six months of publication.
Related:
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Awards for Excellence in Health Care JournalismDeadline: Feb. 3
- How I did it: Falsified charts in nursing homes linked to patient care
- Access Denied: Looking at a lack of health care availability
- Transparency & medical errors: Public reporting of patient harm is a potent force
- Focus on freelancing: Tips for buying liability insurance
- Why do some patients get stuck in hospitals for weeks, months?
- Investigate health professionals and the boards that regulate them
- Presidents of AHCJ, SPJ call for more openness from Obama administration
