Gary Schwitzer's HealthNewsReview Blog

The leading professional organization of health care journalists has just released the latest in its series of "slim guides" - this one written by me with a great deal of help from Ivan Oransky.

"Covering Medical Research: A Guide For Reporting on Studies" is intended primarily for journalists who are new to the beat or for those who have not received training in reporting on the complexities and nuances of evidence-based health care reporting.

The AHCJ statement reads, in part:

"It offers advice on recognizing and reporting the problems, limitations and backstory of a study, as well as publication biases in medical journals and it includes 10 questions you should answer to produce a meaningful and appropriately skeptical report. We hope this guide, supported by the Robert Wood Johnson Foundation, will be a road map to help you do a better job of explaining research results for your audience.

Chapters deal with the hierarchy of evidence, putting types of research into context, scrutinizing the quality of evidence, phases of clinical trials, explaining risk, embargoes, pitfalls of news from scientific meetings, criteria for judging your story and more. The guide links to online resources throughout."

More about this in days and weeks to come.

We hope it will be a good source that will help many journalists.

The September issue of Prevention magazine inaccurately headlines a story, "4 Ways Coffee Cures." There's no solid proof that coffee cures anything - unless some of you cure bacon with java, which I don't want to know about.

What the story (below) did was to try to present a cute little graphic summary of observational studies that show a statistical association between increasing coffee consumption and fewer early deaths, fewer deaths from heart attack, fewer cases of dementia and fewer cases of type 2 diabetes.

But such observational studies (they actually never cite the source - I'm just giving them the benefit of the doubt that they're citing observational studies) can NOT establish cause and effect therefore it is inaccurate for the story to use terms like "cure...protective...lowers (or reduces or slashes) your risk." Besides being inaccurate, such stories fail to educate readers. They mislead.

We ask the editors of Prevention to read and understand our guide, "Does the Language Fit the Evidence? Association versus Causation."

New York Times writer Dana Jennings, who's been publicly sharing his own story of prostate cancer, writes about a new book about someone else's prostate cancer story.

It's "Invasion of the Prostate Snatchers," by Ralph H. Blum and Dr. Mark Scholz.

Jennings writes:

"(The book) is a provocative and frank look at the bewildering world of prostate cancer, from the current state of the multibillion-dollar industry to the range of available treatments.

About 200,000 cases of prostate cancer are diagnosed each year in the United States, and the authors say nearly all of them are overtreated. Most men, they persuasively argue, would be better served having their cancer managed as a chronic condition.

Why? Because most prostate cancers are lackadaisical -- the fourth-class mail of their kind. The authors say "active surveillance" is an effective initial treatment for most men.

They add that only about 1 in 7 men with newly diagnosed prostate cancer are at risk for a serious form of the disease. "Out of 50,000 radical prostatectomies performed every year in the United States alone," Dr. Scholz writes, "more than 40,000 are unnecessary. In other words, the vast majority of men with prostate cancer would have lived just as long without any operation at all. Most did not need to have their sexuality

Yet radical prostatectomy is still the treatment recommended most often, even though a recent study in The New England Journal of Medicine suggested that it extended the lives of just 1 patient in 48.

And surgery, of course, is most often recommended by surgeons and urologists -- who are also surgeons. Mr. Blum writes: "As one seasoned observer of the prostate cancer industry told me, 'Your prostate is worth what Ted Turner would call serious cash money.' " As for patients, their rational thinking has been short-circuited by the word "cancer." Scared, frantic and vulnerable -- relying on a doctor's insight -- they are ripe to being sold on surgery as their best option. Just get it out.

Every urologist I met with after my diagnosis recommended surgery, even though it was believed then that I had a low-risk Stage 1 cancer. The best advice came from my personal urologist, who declined to do my operation because it was beyond him: "Avoid the community hospital guys who do a volume business in prostates."

I did, but I'm still maimed. In my experience, doctors play down punishing side effects like incontinence, impotence and shrinking of the penis. Those are just words when you hear them, but beyond language when you go through them."

Read Jennings' full column. And you may want to pick up your own copy of "Invasion of the Prostate Snatchers." I'm getting mine.

First, let me disclose to anyone who doesn't know me that if you cut me open, I bleed green and gold and cheese for the Green Bay Packers. Because of this, and not despite this, I have remained one of Brett Favre's biggest fans through the good times and the bad, and through his years with the Pack, the Jets (one year) and now the Vikings (will he make it through a second year?). I didn't know anything about him when he started with the Falcons.

I wish the best for him personally.

But news coverage of his ankle has gone from the silly to the ridiculous - with stories including nothing but meaningless terminology that doesn't inform anyone.

The latest: Peter King of Sports Illustrated posted an article claiming that Favre is "already taking injections in his wounded ankle." (Picture at left is from SI website.) Samples of the junk journalism:

• Favre "got an injection of lubricant in the left ankle that has three times been operated on to remove loose bodies. "Like a grease fitting,'' he said.

• Lubricant? What is that lubricant? WD-40? Or, given Brett's age and advertising popularity, is it a new product called BF-40? Grease?

• King writes: "Noted orthopedist Dr. James Andrews did the most recent surgery May 22, with an interested party in the operating theater: Deanna Favre. "They took out a cup full of stuff -- bone and all these other loose bodies.''

• Really? A cup full of stuff? That's what Deanna said. What did Dr. Andrews say? Or wouldn't he be quoted because he cares about patient privacy issues?!?

I could go on but won't. But King's Sports Illustrated stuff has been picked up by all sorts of other news organizations, especially local Twin Cities media. Stories like this don't educate anyone very much or vey well about bone spurs or ankle problems in elite athletes. But they do fan the flames of Favre fever. And I know this is only sports, but this is a missed opportunity to educate people who never get beyond the sports section.

But these are some of the same sportswriters who write about "successful surgery" within minutes after the surgical wound is closed. How do we measure "success" so quickly? Did we learn nothing from the old joke about "The operation was a success, but the patient died?"

Go Pack!

The Recovery Room radio program out of North Carolina has a half hour program on HealthNewsReview.org and on the challenges of health journalism. The program features interviews with me and with Scott Hensley, of NPR's health blog, "Shots."

There are many stories journalists could report about conflicts of interest and questions about evidence in the treatment of low back pain, perhaps especially with spinal fusion. We talked about many of these with journalists from the American Society of News Editors in a workshop at the Foundation for Informed Medical Decision Making in Boston in May.

John Fauber of the Milwaukee Journal-Sentinel hammers one of these issues, looking at how Medtronic's Infuse product "went from revolutionary advance to public health alert."

Here's his story on MedPageToday.com.

His entire "Side Effects: Money, Medicine and Patients" series is indexed on the Milwaukee Journal-Sentinel website.

The image below is from the Journal-Sentinel's online story.

This week, the Twin Cities' two major newspapers reported - in varying but incomplete ways - an announcement from Children's Hospitals and Clinics of Minnesota that it planned to cut up to 250 jobs by mid November.

The Pioneer Press beat its larger crosstown competitor, the Star Tribune, by at least doing some original reporting on the story.

Here's a strength of the story:

"The changes announced this week, (a hospital spokesman) said, stem from more fundamental, long-term challenges facing the hospital. First and foremost, he said, is diminished revenue from the state-federal Medicaid health insurance program.

"We've seen a significant increase in the number of kids relying on Medicaid, and at the same time huge cuts in Medicaid reimbursement," (a hospital spokesman) said.

In the past year, the share of patients at Children's covered by Medicaid has grown from 38 percent to 44 percent.

Hospitals have had a long-standing concern that Medicaid pays too little for hospital services, said Schindler of the Minnesota Hospital Association. The issue hits especially hard at Children's because it has such a large number of Medicaid patients -- the health insurance program typically covers only about 9 percent to 10 percent of patients at most other hospitals in the state, Schindler said.

Medicaid reimbursement rates have been declining each of the past several years, he said, although recent cuts haven't been dramatic."

That's a very important issue - one that is probably under-reported about pressures facing children's hospitals across the country.

But here's a weakness of the story:

"The hospital said a one-day strike by nurses in June, the planned but averted nursing strike in July and the slow economy were factors.

"The net result was a 2.3 percent decline in total revenue equal to $3.2 million," the hospital reported. "The decline in revenue coupled with increased operating expenses and expenses related to the nursing work stoppage resulted in an operating loss of $7.3 million."

Lucas, the hospital spokesman, stressed that one-time factors related to the labor dispute with nurses aren't driving the changes announced this week. The decline in admissions during the quarter was one such event, he said, adding that the hospital had to "ramp down our volumes in anticipation to be sure we were adequately staffed to meet patient needs."

Well, wait a minute: How much of a factor was the nursing issue? The story never explains and, in our view, only confuses the issue.

The story also never commented on the hospital's expensive expansion, arguably the clearest manifestation of its competition with Fairview University medical center, which has also built a new children's facility (pictured at left in a photo taken last summer). We've written about this before, and how the Twin Cities may lead the nation in the number of different, separately-operated, competing children's hospitals it now has.

But the limited Pioneer Press story nonetheless still showed up the state's #1 newspaper, the Star Tribune, which only managed to rewrite and republish an Associated Press story, which ran only 123 words and was put in a little corner of page B4 in the Metro section.

Wow.

Local citizens deserve much more scrutiny of the local hospital industry than that.

e-patient Dave DeBronkart published a review/profile of our project on the website of the JOPM. Excerpts:

"Why would someone interested in participatory medicine want to know about this? Learning to decode news articles about health and health care is essential to being a responsible driver of one's health. It is impossible to act responsibly without good information. Too often the health stories we read have been poorly analyzed and reported on by today's time-pressured reporters, as Schwitzer's reviews make clear. The reviews and methodology presented on this site can help patients bring better quality information to the care relationship with their clinicians, and help all parties make better informed decisions.

Careful scrutiny of health news can be a potent enabler of participatory medicine because of the radical differences in focus between the patient, who must care for only their own illnesses and conditions, and the clinician, who must know about and manage many.
...
We consumers can help physicians stay informed about our health concerns by scouting or digging for relevant articles. Chances are we are not going to search first in the scientific literature, but rather in the news media. For us, this is where quality matters. We depend on accurate representation of new scientific findings by journalists: Is the finding new? How robust is it? At what point in the development process is the drug or treatment approach? Schwitzer's team encourages better health news reporting by publicly critiquing the work of specific journalists while at the same time demonstrating to the public the criteria that each of us should apply in our own reading of the news. Because their criteria are presented in lay terms, they enable consumer participation in health decision making."

Thanks to Dave and to the Journal for their interest in and support of our project and its goals.

And why are so many stories so unquestioning about these runaway surgical Twitter practices? Just look at this frame grab from a Google search showing all the stories (so far) on one hospital team's surgical Twitter exploits. One story stated:

"Senior hand fellows...when not actively involved in the surgery, sat at a laptop just outside the operating suite and tweeted real-time updates during the procedure, according to a hospital press release. According to the Twitter feed, expert teams of hand surgeons rotated in and out of the operating room throughout the surgery."

Oh, phew, their hands were tweeting when their hands were not operating! I might rather that my surgeons - even when not actively involved in the operation and when rotating out of the OR - would just rest their digits and not flex them digitally. But what an old-fashioned guy I am.

The New York Times' new public editor (or ombudsman), Arthur S. Brisbane, writes that his blog "opens with an entry in the field of science, something my mama told me never to do." Actually, we hope to see much of this.

His opening target: the paper's own front-page story of Aug. 10 by science reporter Gina Kolata, headlined "In Spinal Test, Early Warning on Alzheimer's," with a subhead that said "100% Accuracy Found in Study Results."

He acknowledges that "The piece drew dissenting comments from a number of readers, including some with PhD appended to their names."

We were among the critics, with our systematic story review (that called it misleading) and our blog posts:

• http://www.healthnewsreview.org/blog/2010/08/common-themes-in-the-alzheimers-test-stories-the-cancer-society-screening-ad.html

•
http://www.healthnewsreview.org/blog/2010/08/ucla-md-says-nyt-alzheimers-test-story-was-far-worse-than-our-review-suggested.html

• http://www.healthnewsreview.org/blog/2010/08/hope-vs-false-hopeharm-in-news-stories-about-alzheimers-als.html

Brisbane writes that the subhead and the lead to the story "create the clear impression that here is a test that will enable you to walk into your doctor's office and find out with 100% accuracy whether you will get Alzheimer's. In fact, the study said something much narrower than that." And more:

"My take is that danger awaits stories that venture into the land of 100% -- or any other absolute, for that matter. Stories that report on something that is a "first," a "biggest," an "only"; stories that employ "never," and stories that predict with absolute certainty are often headed for trouble. Yes, sometimes an absolute is absolutely right, but many, many times there is a crack of imperfection there.

A better approach in this case would have been to offer either a narrower claim for the 100% connection among factors or a broader description, less the absolute, of a promising new study of Alzheimer's."

Read his entire column and note the comments left online by some smart readers as well.

On Twitter, Paul Raeburn wrote - in an apparent assessment of Brisbane's assessment: "OK, I guess, but superficial." Raeburn was among the early critics of the original Kolata story in his contribution to the Knight Science Journalism Tracker.

But the Times' public editor did write: "I could go on making further distinctions about the study, its structure and findings but the risk of saying something inaccurate grows, so I will stop and ask the question: What went wrong here and what should the story have said instead?"

I applaud Brisbane's scrutiny of the story, limited though it may be. There is so much good done by the New York Times. But there is so much that could be so much better. Maybe his columns will help the paper look in the mirror and achieve that goal.

This is a very important story.

"Unfortunately," as a Mayo Clinic physician says in the story, "this is something that isn't well understood, not just by the public - but by physicians who order the tests."

Special focus was placed on the nuclear technologies of breast-specific gamma imaging and positron emission mammography. The story says a single exam with one of these tests "exposes patients to a risk of radiation-induced cancer that is comparable to the risk from an entire lifetime of yearly mammograms starting at 40."

And the story goes on to discuss a concern that these tests will "become more widespread and casual...now being considered and even being used in some cases as screening tests, and this is not appropriate" - according to the Mayo physician quoted.

Predictably, local media in Minneapolis-St. Paul are all over a news release from the University of Minnesota about lab experiments - we're talking petri dishes not people - that showed a two drug combo impacted HIV.

But KSTP-TV - the ABC station in the city - headlined this on its website as "U of M Researchers May Have HIV Cure."

Shame on them. This is a classic example of local cheerleading for local research - note the University flag photo in the story. And it's a classic example of how bad not only some local TV news is on the air, but on station websites. Inaccurate, imbalanced, incomplete, sensational, insensitive to viewer/patient needs.

What a horrible piece of hype, undoubtedly causing some excitement among people affected by HIV - until they read the details.

To be clear: this is an interesting and important area of research.

But it does harm - not good - for a news organization to report that this may be a cure when it hasn't even been tested in one person yet.

Addendum on August 24: KSTP's crosstown competitor, KARE (NBC) tonight got around to the story a day later than KSTP but didn't put the extra time it took to file to much better use. It wasn't until 135 words deep in a 195 word story that the story even mentioned that this hadn't even been tested in people yet, and then almost as an afterthought:

"Plenty more research needs to be done, including clinical trials in humans, which are still a ways off. But researchers have already tested the drugs in mice and found positive results."

Do we really have to remind anyone that you could line up from here to the moon and back things that looked good in the test tube and in mice but didn't pan out in people? Perhaps especially with HIV? But there wasn't much analysis here - just more hometown cheerleading.

I ask news directors of KSTP and KARE: What are the chances you would have even aired a 10-second reader if this research had come out of neighboring Madison or Iowa?

I knew about it. But I wasn't going to write about it because I did last year and my criticism apparently went nowhere.

But then a former journalism student, Emma Carew, now at the Star Tribune, tweeted me this morning about the latest round of Pfizer-funded cancer seminars at the National Press Foundation in Washington, D.C.:

@garyschwitzer your thoughts? JOURNOS: Attend a 4-day seminar on cancer issues in DC. All expenses paid. http://j.mp/cgJ8eH. about 5 hours ago (from @emmacarew)

My quick responses as soon as I could respond:

Wouldn't want on my c-v! I criticized these Pfizer-pfunded seminars to NPF & SPJ which helped promote it last year. Deaf ears. http://bit.ly/9gHkyK. about 3 hours ago

Maybe it's a good thing this issue did get dusted off again. It's clear that others are upset about it, because the online Twitter conversation continued:

@garyschwitzer part of the multi level marketing campaign - it's not enough 2 use direct 2 consumer/doctor advertising - need the press also about 3 hours ago via web (from @WriteWithStan)

Just a (choke) whiff of conflict-of-interest RT @garyschwitzer: @emmacarew All expenses paid (by Pfizer) cancer seminar. http://j.mp/cgJ8eH about 3 hours ago via HootSuite (from @MedicalBillDog)

Journalism organizations too cozy with drug industry... http://bit.ly/bh8uaZ Gary Schwitzer's HealthNewsReview #UMN about 3 hours ago via bitly (from @wbgleason)

RT @wbgleason: Journalism organizations too cozy with drug industry... http://bit.ly/bh8uaZ Gary Schwitzer's HealthNewsReview #UMN about 3 hours ago via HootSuite (from Michael Caputo, Minnesota Public Radio)

I wish more journalists like Caputo would report on this. Journalists have been terribly quiet. I know at least one news organization plans to report on this soon because I've been asked for a reaction by a reporter via email this afternoon.

This one shouldn't be swept under the rug because it's questioning a "news foundation."

Addendum on August 24: For more, read Christopher Weaver's piece on the NPR Shots health blog.

And my followup to what was said in that piece, even if National Press Foundation staff choose the speakers and set the agenda, even if the Pfizer "guy never even showed up" last year, even if one reporter doesn't recall Pfizer even being mentioned once at last year's session, one fact remains. Some journalists will have taken Pfizer money to attend this session. Journalists are taught to avoid even the perception of conflict. Or are they taught that anymore?

Addendum on August 25: Other key perspectives just posted by Merrill Goozner on his blog.

Addendum on August 27:

I look forward to exchanging ideas with NPF.

Very important and very well done story by Richard Knox of NPR. It's enterprise reporting - not something he did in response to a news release coming across his desk. He evaluated evidence. He found troubling patient stories in young women - not the glowing, happy faces and balloons the drugmaker provides in ads and testimonials. He interviewed several expert sources.

This is a must read - you can read the text online.

Or a must-listen, which you can do here:

Interesting piece by Elizabeth Cooney in the Boston Globe, "TMI! - Too much information? Chat rooms, infomercials, tweeting: Young women face new challenges in search for solid answers about their health."

Interesting sidebar:

Top 10 questions from young women

Dr. Hope Ricciotti, gynecologist-obstetrician, says these are among the most frequent queries she gets from her youngest patients:

1. How can I get rid of PMS?
2. Does what I eat really make any difference?
3. I'm thin, so I don't have to exercise, right?
4. Do I have to exercise?
5. How can I have better sex?
6. Do I really have to tell you everything?
7. Can a Pap test detect sexually transmitted infections?
8. Can my underwire bra cause breast cancer?
9. Is a manicure good or bad for my health?
10. What does that vaginal discharge mean?

The story quotes one young woman with an interesting perspective: "I usually go to the Internet, but it can be troublesome. I make sure I look at the credentials of whatever I'm looking at. On WebMD, it can be nerve-wracking when you list several symptoms and it may make you seem like you have a bigger problem than you actually do.''

And the story lists resources for young men as well.

On MinnPost.com, Susan Perry previews a piece in next month's Mother Jones magazine by Dr. Carl Elliott of the University of Minnesota about the suicide of a young man who was enrolled at the time in a University of Minnesota industry-funded clinical trial of the antipsychotic drug Seroquel (quetiapine). Perry writes:

"It's a disturbing tale (the unsuccessful efforts of (patient Dan) Markingson's mother to get her son released from the trial and into other treatment are particularly heartbreaking) and one that, as Elliott acknowledges, was first told in the Pioneer Press by Jeremy Olson and Paul Tosto.

But Elliott's purpose in writing the article wasn't only to revisit the tragic details of Markingson's story. "[T]he more I examined the medical and court records, the more I became convinced that the problem was worse than the Pioneer Press had reported," he writes. "The danger lies not just in the particular circumstances that led to Dan's death, but in a system of clinical research that has been thoroughly co-opted by market forces, so that many studies have become little more than covert instruments for promoting drugs. The study in which Dan died starkly illustrates the hazards of market-driven research and the inadequacy of our current oversight system to detect them."

The story is a sorry chapter in a checkered history of U of Minnesota medical school research ethics practices.

Perry advises that "The Mother Jones article reaches subscribers' mailboxes today. Everybody else will have to wait until it hits the newsstands on Aug. 31."

On the Croakey blog, Melissa Sweet writes about some burning conflict of interest questions in her corner of the world. Excerpt:

"...it would be useful to have a central online registry where journalists and others could easily search to see the commercial ties and COI policies of health and medical experts. This might also be useful for patients, especially when making major health care decisions. I was heartened to hear one psychiatrist in the audience is considering how best to declare such information to patients.

Meanwhile, I also showed this image of a flier distributed at the Dietitians Association of Australia conference in Darwin last year."

While we're on the Mac attack, a PR company (which I've asked to stop sending me stuff), compared its clients' claims in a head-to-head with McD.

I'm not taking sides. I really don't care. Let 'em fight it out in the gutter.

And to the PR company, I ask again that you stop sending me your fluffy news releases.

I'm late on this, but just want to acknowledge that, yes, I've seen the very clever journalism warning labels pictured and offered on this site. Many good friends and contacts wrote me about this - some urging HealthNewsReview.org to produce its own. And we may.

Out of many great labels offered, this one is perhaps my favorite.

All you have to do is use our search engine on HealthNewsReview.org to search for "Alzheimer's" and you'll get countless returns of stories and claims such as:

• Spinal-Fluid Test Is Found to Predict Alzheimer's

• Drug for Immune Disorders Helps Alzheimer's

• Miracle drug for Alzheimer's patients

• A cocktail to remember? Nutrient elixir shows promise against Alzheimer's

I could go on and on listing a litany of claims about abilities to diagnose Alzheimer's Disease earlier and better, surely leading the way to better treatments. Some stories already make sensational claims about treatments.

Now read Derek Lowe's important blog post, "Lilly's Gamma Secretase Inhibitor for Alzheimer's: Worse Than Nothing." Excerpts:

"Well, well, well. We finally have solid clinical data from a large trial of a gamma-secretase inhibitor for Alzheimer's disease. And it doesn't work.
...
And now we have the results.

Nothing. Worse than nothing - they saw real declines in cognitive function compared to the placebo group. It's not getting as much play in the news this morning, but it also appears - insult to injury - that the drug was associated with a greater risk of skin cancer. Lilly has halted any development, and told all the study centers to stop dosing immediately. All the patients who received it will be monitored to see how they do over the next few months.

This is about as bad a result as could possibly be obtained, and I think it really has to torpedo the idea of gamma secretase as a drug target. Unless someone comes up with a very compelling and intricate argument to explain these results, I don't see how anyone can risk going down this particular road again. What must they be thinking today over at Bristol-Myers Squibb, where they've been developing a direct competitor, BMS708163?

And what does this say about the amyloid hypothesis itself? Nothing good. This is the crucial period for the whole idea, with several different approaches finally yielding late-stage clinical data. And it's starting to look as if the whole idea may have been just a terrible diversion."

This is an example of why we react negatively to stories that mention "new pathways to a cure" after a study of just 3 people - as the NYT piece yesterday on Lou Gehrig's Disease did.

This is why we react negatively to Alzheimer's Disease stories that emphasize what scans can show when we don't fully understand what the images and findings mean.

This is why we react negatively to Alzheimer's stories about treatments that hype results from small, preliminary studies.

We think it's wrong - bordering on malicious - for journalists to sensationalize research findings in an area where sick people are desperate for evidence and for solid information on benefits and harms. Hope has value; sick people have told me that THEY can decide where to invest their hope - they don't need journalists doing it for them. False hope is a harm. And it's a harm that is committed far too often in news coverage of diseases like ALS and Alzheimer's disease.

ADDENDA ON AUGUST 18:

See the Harvard Health Blog post,
"Alzheimer's study on biomarkers generates debate."

See also Robert Langreth's column on Forbes.com,
"The Man Who Predicted Eli Lilly Alzheimer Failure."

This was one time when the headline was OK, but the story that followed had our heads spinning. "Study Says Brain Trauma Can Mimic Lou Gehrig's Disease" is a story that was troubling on a number of fronts. It reported on a study which at the time had not yet been published suggesting that some "athletes and soldiers given a diagnosis of amyotrophic lateral sclerosis...might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma."

To be clear - and please don't anyone miss or miscontrue this point - this is an important and fascinating area of research.

But the story did not exhibit the best of health/medical/science journalism.

1. It was based on a study of 3 people. (The ALS Association says there are up to 30,000 people in the US living with ALS.)

2. It stated, "Lou Gehrig might not have had Lou Gehrig's disease." (No evidence for this was provided. He also may not have been a great left-handed hitter. That may have been an optical illusion.)

3. It said this could "perhaps lead toward new pathways for a cure." (After a suggestive finding in just three people?)

4. The story later says, "The finding's relevance to Gehrig is less clear." (Hedging already after a bold earlier statement in the story.)

5. But just a few paragraphs later, the story says, "The new finding...suggests that Gehrig might not have had (ALS)." (Head spinning yet?)

5. The story dropped lots of big names - Gehrig, Stephen Hawking, Michael J. Fox, former NFL players Wally Hilgenberg and Eric Scoggins, Cal Ripken - in a jumble of claims, associations - or was it just plain name-dropping in order to make the story more appealing?

6. The story brought in "recent epidemiological studies" in soccer players and soldiers without one word about the possible limitations of such studies.

7. It went into detail that a historian or sports nut would love about Gehrig's football concussions or baseball beanings or fights with Ty Cobb. But all of this just fed the theory that was not supported by anything but guesswork and innuendo.

The story ends with a quote from a Gehrig biographer:

"Lou Gehrig wanted to know everything possible about his own illness -- he got to know his doctors, talked with scientists with obscure approaches, and volunteered himself as a guinea pig to find any way to combat the disease. He wouldn't stick in the sand and not want to hear about this. If he were around today, he would continue to have that same curiosity, and that burning desire, to help his situation, or to help others."

As we said earlier, this is important and fascinating research. So we don't think anyone should stick their head in the sand over this research either. But the story also didn't require any hype - the kind it received from the NYT.

Additional thoughts from Dr. Steven Atlas of Massachusetts General Hospital, one of our medical editors:

"This represents a small and interesting case series. The lowest rung on the clinical evidence ladder. It is a pretty big stretch to imply that Lou Gehrig may not have had ALS. To imply that one would need to know how common this is. One line of evidence is that NFL players may be more likely to be diagnosed with ALS than the general public. But it is also possible that given their occupational history, one may look for it more carefully. Another way would be to do a case control study. One could take individuals diagnosed with ALS and maybe age and sex matched controls to see if there is a history of prior brain trauma. For pathologists, one method would be to work to do postmortem exams on more patients with ALS to see if they had the pathological changes of ALS or recurrent brain trauma. One could independently get history of prior brain trauma to see if history and pathology line up. The bottom line as you mention is that this is an intriguing study. It is doubtful that such a study may lead to a "cure" unless one means that we seek to decrease brain trauma in the first place. As the article mentions well into it, we won't know whether Gehrig has ALS or not, but one can't help but surmise that he did have ALS until data shows that much of ALS is in fact a side effect of brain trauma. Finally, even if brain trauma is associated, it is possible that genetic factors that would lead to ALS are present in these individuals with brain trauma. Specifically, is it the severity of the brain trauma that predicts this? Or is it the genetics that dominate and the trauma is the straw that broke the camels back?"

Complexities that, despite the long word count, this story didn't address.

Addendum on August 18:

See Neurocritic blog post:
"Lou Gehrig Probably Died of Lou Gehrig's Disease."

After four years and after publishing more than 1,100 stories on HealthNewsReview.org, we've probably only received a handful (fewer than 10) messages from people who felt we were too soft in our review of a story. But our review of a New York Times story on Alzheimer's Disease was way too soft in the eyes of Dr. Jerome Hoffman, a UCLA emergency medicine specialist, who wrote to me. (This despite the fact that our review stated that the story "was inaccurate...encourages confusion...likely to mislead readers...fails to mention costs...does not alert readers to the possible financial consequences of a test indicating that a person is likely to develop Alzheimer's Disease...perhaps the NYT will pursue this as a next-day folo....discussion of potential harms seems imbalanced....caveats are overshadowed by the strong wording of the headline and lead sentence....fails to note the industry connections of key researchers and the industry funding of the study.")

He gave me permission to quote directly from his email:

Dear Gary,

Let me start off by saying that I love your work -- it is routinely outstanding. So I'm a little embarrassed that I'm only writing now, when I believe you could (and should) have done a better job re: the latest NYT puff piece by Gina Kolata. (I suspect you've seen Vera Sharav's review of same, which I think does a better job of addressing head-on some of the most critical aspects of this.)

I understand that it is best to bend over backward to avoid any remote appearance of stridor, and also acknowledge that you are typically not afraid to be direct and pointedly critical; still, given the real harm surely caused by Ms Kolata's endless hucksterism (backed by the clout of the NYT), I think you missed an opportunity to address not only the outrageous distortions in this particular piece ("100% accurate" -- which is not only on the face of it inaccurate, as you point out, but is surely much worse than she and the researchers claim, given huge methodologic issues re: the "gold" standard, and their confusing how often it's present once disease is clinically evident with how well it predicts later disease, at earlier and earlier pre-clinical times), but larger issues, like failure to mention conflicts of interest or give real credence to contrary views (in an instance where these should be stressed at least as much as usual), conflation of association with cause, creation of disease (hyper-amyloidemia) whose purpose is surely to allow some drug company to develop a blockbuster drug that will be "proven" in some study to "decrease amyloid burden" (even if it has zero effect on any patient-oriented end-point), and a half-dozen other important ones.

You do regularly make big-picture points, but I believe it's particularly important to hold the NYT's foot to the fire. One only has to read the posts about her article to see how effective she (and the companies pushing these, and so many other, tests) are with their use of the combination of fear-mongering and "hope-mongering" (evidence and conflicts of interest be damned). Of course there are also a bunch of thoughtful and critical comments, but there are lots on the order of "it doesn't matter if it's really true, we must try to do something about this terrible disease!"

One other point I feel obliged to make - I believe your comment that "the story is newsworthy" is actually a huge stretch. As one of the more astute readers posted at the NYT website, one could surely find dozens of "promising developments" hailed by the Times each year that we'll never hear of again. Worse, almost all the ones we do later hear about are great successes only in terms of profit (but not health). It's ironic that Kolata compared this test with cholesterol -- since the "best" that's likely to come of it is that it will label zillions of people, and get them to take drugs for years and years ... even if "the amyloid hypothesis" proves as misleading as the cholesterol hypothesis. This story will actually become newsworthy if and only when the years of testing you mention are done, and prove productive, and there is (separately) an actual useful intervention that aborts Alzheimer's Disease progression; even if both of these unlikely events actually happen, it surely won't be for ages and ages -- so running a top of the front-page story in the NYT, now, is vastly counterproductive ... unless the goal is to create desperate expectations, so that when the inevitable anti-amylase drug comes along, it will be impossible for FDA, or Medicare, to say no.

I hope you'll understand that these comments come from someone who greatly admires the excellent work that you routinely do. (I have written you before, simply to praise your work; but it remains unfortunate that people mostly write to complain ... so for that I do apologize.)

Best,

Jerry Hoffman

Reflecting on what we DID say in our review, I believe Dr. Hoffman missed some key points. However, I am very pleased that he wrote and I'm very pleased to post his comments.

One reason we maintain this site - and especially this blog - is to encourage more intelligent discussion of the quality (or lack thereof) in health care news and information disseminated to news consumers and health care consumers.

For now I won't debate any of what Dr. Hoffman wrote. I open this up to other readers.

Please weigh in on this - or on any of our reviews or blog posts - any time.

ADDENDUM ON AUGUST 18:

See the Harvard Health Blog post,
"Alzheimer's study on biomarkers generates debate."

Earlier this week, the NBC Today show brought viewers news of robotic heart surgery - from Australia! Our observations:

• The story went out of its way to name the company making the robotic system - making it feel awfully ad-like. Maybe from a video news release?

• The story said this was "one of only two being used in Australia" but nothing about any US experience. Are viewers in Adelaide, Australia now part of the Today Show's key demo?

• Nothing on cost or evidence.

• Nothing with any context - just more gee-whiz, high-tech drooling - especially because it had ROBOT in the title. Way cool.

• It was 50 seconds of "must miss TV" but we bring it to you anyway.

Visit msnbc.com for breaking news, world news, and news about the economy

Dr. Val Jones' Get Better Health site wrapped up our entire thread of posts on the American Cancer Society Cancer Action Network ad campaign - from our original criticism through to Newsweek joining the analysis and on to ACS CAN pulling the ad.

On the Retraction Watch blog:

"Kudos to Schwitzer for having an impact and reminding the ACS that data must drive our health care decisions and spending.The episode is a good reminder that blogs can have an impact."

Lots of Twitter action on the topic.

Mary Carmichael of Newsweek wrote:

"Wow! ACS shows real class. Kudos all round."

Journalist Bill Heisel (a reviewer on HealthNewsReview.org) wrote:

"Stunning example of pen > sword."

Physician-writer Ben Goldacre of the UK tweeted:

"Overstated cancer screening ad gets pulled after excellent blog post by @garyschwitzer."

Of course, there are also many online comments left by readers - after each of our blog entries on this topic, on the Newsweek site's blog post, and on MedPageToday.com, which is also re-posting our work. Not all of the comments agree with our stance - although most do. Regardless, we need to have a better public discussion about what's incomplete and unhelpful about vague messages like the "Screening is Seeing" campaign conveyed. I know that some parties within the American Cancer Society agree with me and I would look forward to working with them in trying to improve these messages in the future.

But, as Mary Carmichael pointed out, ACS - or its arm of ACS CAN - took the right first step by pulling the ad.

Now let's take a deep breath and try it again.

A national spokesperson for the ACS CAN office confirmed late today that the "Screening is Seeing" ad that I criticized on this blog yesterday has now been pulled.

The spokesperson said, "It would be unfortunate if, in trying to raise awareness about this critical issue, a brief, powerful message in the ad became the story rather than the issue itself."

It has become clear to me within the last 24 hours that the ad was not universally embraced within the American Cancer Society and that there was significant agreement with the stance I took in criticizing the ad.

More to come on this as it becomes available.

On his Retraction Watch blog, Ivan Oransky comments on the shroud of retraction as he calls it. The blog quotes the journal editor's retraction notice:

"As Editor-in-Chief of Virology Journal I wish to apologize for the publication of the article entitled "Influenza or not influenza: Analysis of a case of high fever that happened 2000 years ago in Biblical time", which clearly does not provide the type of robust supporting data required for a case report and does not meet the high standards expected of a peer-reviewed scientific journal."

Oransky credits one blogger's work on the story:

"(Bob) O'Hara's tongue-in-cheek yet exasperated analysis of the paper is worth the read and deserves the traffic, so I will send you there instead of quote it extensively. But let's just say it includes a reference to a sentence in the paper pointing out that Luke could not have quantified Christ's temperature because the Fahrenheit scale was not devised until 1724."

Lighthearted but important reminder: publication in a journal does not mean that the Word has been etched in stone tablets.

Since I posted a note earlier this week about Larry Husten's fine journalism on Cardiobrief.org regarding the SHAPE (Society for Heart Attack Prevention and Eradication) cardiovascular screening guidelines, I'm now posting a link to his followup story. Excerpt:

"Earlier this week we reported that SHAPE was preparing to update its controversial guidelines. It now appears that the guidelines are only the public facade of a larger program designed to encourage the growth of, and take a larger share of, the business of cardiovascular screening. Although conflict-of-interest concerns have previously swirled around SHAPE, new evidence suggests that the non-profit organization has aligned itself with a commercial venture, and presumably stands to benefit from the success of these projects."

If you're interested (as I think you will and should be), please go the link above to read Larry's full story.

Today on this site we've reviewed three stories that made claims about a new Alzheimer's Disease test. Each was far less than what it could have been. Here are the reviews, for your convenience:

• New York Times story review
• WebMD story review
• Reuters story review.

Also today I blogged about my concerns over a new American Cancer Society ad campaign, "Screening is Seeing."

It strikes me that there's a common theme between what was missing in the Alzheimer's test stories and what bothered me about the ACS screening ad.

One of our story reviewers, journalist Andrew Holtz, wrote to me after reviewing the three Alzheimer's stories:

"One general comment is the responsibility of journalists to word stories in a way that avoids lazy assumptions that "it's better to know." Not only do the results of this study document how many false positives this test would produce if used in isolation. Identifying someone as having (or likely to develop) an untreatable condition is likely to create great mischief while providing a benefit in only very specific circumstances."

Granted, the Cancer Society ad wasn't about untreatable conditions. But it did promote the broad, vague "it's better to know" concept, drumming that into consumers minds once again.

Holtz writes about "providing a benefit in only very specific circumstances." Messages about screening also need to be specific - for specific audiences for whom the evidence is clear. Otherwise the messages may encourage screening in populations for whom the uncertainties mount, and for whom the potential harms may start to stack up with the potential benefits.

Sometimes you just need to step back, connect the dots, and see the firehose of "screen, screen, screen...test, test, test" messages that deluge the American public. And realize there has to be a better way.

Addendum 4:20 pm Central time 8/11: Mary Carmichael of Newsweek built on my criticism of the ACS ad campaign and improved on it by creating a mock counter-ad. Get the message, ACS?

A well-intentioned ad campaign run by the American Cancer Society is too vague, and, therefore, may leave impressions that are imbalanced, incomplete and unsubstantiated - the kind of common tactic seen in many drug company ads.

That's my opinion based on my analysis of the ad and based on my reading of the text.

A Cancer Society news release states:

The American Cancer Society Cancer Action Network (ACS CAN) is launching a new print and online advertising campaign in congressional districts across the country this week, urging lawmakers to fully fund a lifesaving cancer prevention, early detection and diagnostic program that is celebrating 20 years of screening low income, uninsured, and medically underserved women for breast and cervical cancer. The ads also send the message that when it comes to increasing your odds of surviving cancer, access to evidence-based early detection tools is critical.

The ads reference the Centers for Disease Control and Prevention's (CDC) National Breast and Cervical Cancer Early Detection Program (NBCCEDP), which has a track record of reducing deaths from breast and cervical cancer. The program has provided more than 9 million screening exams to more than 3 million women and diagnosed more than 40,000 cases of breast cancer and more than 2,000 cases of cervical cancer since it launched in 1990. But with limited funding, the program is able to serve fewer than 1 in 5 eligible women.

The accomplishments of the CDC NBCCEDP are noteworthy. So this blog entry is no knock on that program.

It's a criticism of the ad.

There is no specific mention of the specific goals of the CDC NBCCEDP. The ad doesn't state what the news release states that this is promoting "20 years of screening low income, uninsured, and medically underserved women for breast and cervical cancer."

Instead, the ad promotes unspecified screening - all screening, one could infer. "We can't fight cancer if we can't see it....When it comes to cancer, screening is seeing...It's time to take the blindfolds off and stop cancer before it starts." Catchy phrases from an ad agency or from someone creative at the Cancer Society. But are we talking about prostate cancer screening? Lung cancer CT scan screening? Ovarian cancer screening? Show me where it does NOT say that. And show me where it DOES say this was about breast & pap smear screening for medically underserved women?

But this is a fund raising and political message: "current funding isn't enough...tell your members of Congress (to) increase funding..."

And when you're raising funds, a little vague fear-mongering can't hurt, right?

Wrong.

One other piece of copy from the ad demands scrutiny: "60% of cancer deaths could be prevented." The implication is that's all from screening because screening is the only prevention method mentioned in the ad. Nothing about stop smoking or other lifestyle changes. If the ad meant to imply that 60% of cancer deaths could be prevented just from screening, it should provide the evidence for that. If the ad did not mean to imply that, but was just misleadingly vague, then I call for the ACS to pull this ad. In either case, I think they have a problem.

That unsubstantiated 60% figure is especially ironic since the ACS news release includes this line: "Access to evidence-based prevention is just one component of the fight to defeat cancer." We needed a little more clear evidence here - evidence that would show that screening is just one part of prevention.

Earlier this summer I criticized a federal agency's vague screening promotion ads. I'll end this note in a fashion similar to the way I ended that note:

I know that the folks at the American Cancer Society (or their ad agency) had their hearts in the right place with this campaign. But their heads have to do a better job of learning how to communicate about screening. Or else they'll be guilty of the same disease-mongering techniques that are so prevalent in so many other messages in general circulation these days. The worried well are constantly whipped into a frenzy over the supposed weapons of mass destruction inside all of us. As a physician-colleague reminded me: "All screening tests cause harm; some may do good as well."

You'd never know it from the ACS ad. But then again, it's "only" a fundraising ad, right?

It's not pretty watching sausage being made. Larry Husten of Cardiobrief.org provides a peek at the process - as seen in new and controversial cardiovascular prevention guidelines:

"The Society for Heart Attack Prevention and Eradication (SHAPE) has announced the formation of a new task force "to refine and update" its earlier published guidelines.
...
The earlier guidelines, when published in a supplement to the American Journal of Cardiology, were not endorsed by the American College of Cardiology, American Heart Association, or the National Heart Lung & Blood Institute, and received a mixed response from the cardiology community. A typical response came from Robert Califf, who told heartwire: "It's an opinion, it's not a guideline that's been vetted through any kind of ecumenical group of people who have any official standing to make clinical-practice guidelines. There's enough evidence to have an opinion about this; I don't think there's enough evidence to have a policy about it. It's an interesting idea and it could be right. Then again, it may not be right."

A further complicating factor is the role of SHAPE's founder and current chairman, Morteza Naghavi, who has numerous financial interests in technologies and devices that stand to benefit from SHAPE policies and the Texas legislation.

On the other hand, the AJC supplement was introduced by a prominent cardiologist, Valentin Fuster, and co-authors of the guidelines included such leading figures as PK Shah, Pam Douglas, Sanjay Kaul, and others. Many cardiologists, though critical of SHAPE and its methods,nevertheless broadly support efforts to identify people at high risk for MI.

The SHAPE press release announcing the new Task Force (see below) takes no note of the controversy and calls the publication "a major breakthrough in preventive cardiology." The press release also refers to a bill passed last year in Texas that requires reimbursement for heart attack screening, but does not mention that the bill was actively supported and promoted by SHAPE, and that SHAPE was widely criticized for its role in promoting the legislation."

Husten also includes links to previous Cardiobrief coverage of SHAPE and the full SHAPE news release. From that news release, perhaps the most controversial section was this:

"...the wider use of atherosclerosis tests has improved the affordability of the procedures. In major U.S. cities patients pay approximately $100 to have their coronary artery calcium score (CACS) measured by CT scan or carotid intima-media thickness (CIMT) and carotid plaque measured by ultrasonography. And progress is being made to persuade insurance companies to cover the costs of such preventive screening tests in the interests of public health and prevention. In 2009, Texas Governor Rick Perry signed the nation's first heart Attack Preventive Screening Bill into law requiring insurance reimbursement for the tests."

And for doing so in the heart of Medtronic country, as the Strib reminds readers:

The state is home to Medtronic Inc., the world's largest maker of devices used in spine surgery, as well as Abbott Northwestern Hospital, which performs more spine fusion surgeries on Medicare patients than any other hospital in the country, according to the industry publication Orthopedic Network News.

We applaud the newspaper for pursuing this story, one that was recommended to them months ago by me and other members of the Minnesota Shared Decision Making Collaborative, including Dr. Craig Christianson, who is quoted in the piece. It's part of an occasional Star Tribune series, "Too much medicine? When less is more in health care."