Condition: Confused

When The Globe and Mail‘s medical reporter Wallace Immen was covering the annual meeting of the American Heart Association in New Orleans last November, a PR representative from one of the pharmaceutical companies was anxious to speak to him. Paul Taylor, another medical reporter at the Globe, was working on the assignment desk that morning when the call came in. The representative said he had arranged for Immen to talk to a Canadian physician about the company’s new cholesterol-lowering drug. Taylor never passed the message along because, ashe later put it, the company “was just trying to get its name in the paper.”

Not all journalists reporting on medicine are as perceptive. For all the good, solid medical reporting by the lay press, there is a lot of poor reporting that creates undue worry and alarm-and sometimes unfounded hope-in the public. Abortions cause breast cancer. Estrogen replacement therapy causes breast cancer (or, depending on the reports, prevents heart disease and sharpens the memory and concentration). Cold viruses can kill cancer. Calcium channel blockers can kill too (but not cancer cells). And there are terrifying, drug-resistant bacteria lurking at hospitals, preying on the sick.

Newspapers, magazines and television news stories are full of sloppy, inaccurate and sensationalist reporting of medical news. How has this state of affairs come about? Why is there so much medical misinformation floating about in the media, masquerading as truth?

Perhaps one of the primary reasons is that the public wants to hear that science has provided a simple solution to life-threatening illnesses. Not only that, we all seem to enjoy doomsday stories. This appetite for medical news actively encourages the press to indulge in extra helpings of hyperbole. Dr. Marcia Angell, executive editor of The New England Journal of Medicine, believes that the insatiable hunger for health news leads to cutthroat competition among journalists, which in turn affects the quality of medical reporting.

Dr. Angell is referring to the kind of stories that present a simple conclusion at the expense of a complex one. A case in point was a November 1996 article in the Boston Globe (reprinted in The Globe and Mail the same month), which made the stark statement that cancer “can be avoided through eating well, exercising regularly and not smoking.” In other words, meat-eating, cigarette-smoking, fibre-shunning, hedonistic sloths are condemned to die an agonizing death that they could have prevented through a virtuous, prudent lifestyle. The piece came out of a Harvard School of Public Health report, and granted, the main thrust of the article was to re-emphasize healthy life choices rather than overplay environmental threats as causes of cancer. In the end, though, the article, with its set of basic diet guidelines for the reader, not only came across as didactic but came close to reproaching the victim.

Dr. Angell is concerned about such reporting: “We have come to believe that good health and long life are a matter of character, of doing things right,” she says. “If people keep their cholesterol down and exercise, they’ll live forever.” A balanced diet, exercise and avoiding tobacco will always stand a person in good stead, it’s true, but there are also myriad other factors that cause cancer. In fact, as any cancer researcher will tell you, the complete etiology of cancer is not known. Sometimes, difficult as it is to admit, science does not have all the answers.

Dr. Angell worries that articles like the one in the Boston Globe may lead some readers to believe there is a magic formula for a long life. The recent rash of stories on breast cancer illustrates perfectly this kind of simplistic reporting. Apparently, Japanese women have an enviably low incidence of breast cancer, and many researchers have concluded that it may be due to their low-fat, high-grain diet. In October 1996, The Toronto Star, in an entire section on breast cancer, discussed the research that is currently in progress and referred to the famous salubrious Japanese diet. “Once Japanese women come here, their rates of breast cancer start to increase,” reporter Trish Crawford wrote ominously, “until their granddaughters end up with the same levels of incidence as those who have been here many generations.” However, what she failed to note is that this is a tenuous link at best. The Japanese also have a high incidence of stomach and esophagus cancer-diseases that are more likely to be a result of dietary habits. And if readers perused the whole section carefully, they would have seen a comment from Steven Narod, chair of breast cancer research at Women’s College Hospital in Toronto, to the effect that dietary research so far has proved disappointing.

Faced with Crawford’s piece, however, breast-cancer patients could end up feeling guilty, angry or just plain confused. A woman who has been diagnosed with this disease might wonder how she could develop such a devastating illness when she has done all the right things. Once again, the assumption is that a regimen of meticulous calorie-counting, abstaining from fat, alcohol and sugar, quaffing elixirs, popping vitamins, exercising vigorously and twisting your body into yoga contortions are a panacea for all of life’s ills. Yet the media’s how-to guides for a long and healthy life seem to ignore that sometimes, for still-mysterious reasons, the body’s immune system breaks down.

Blame for this kind of oversimplification can’t be placed solely on reporters’ shoulders. Pharmaceutical companies-which are, after all, in the business of making money as well as finding cures for what ails us-can subtly influence our perspective. In Canada, such companies are forbidden by law to advertise prescription drugs directly to the consumer, but they can-and do-try to use the media to carry their message. Immen’s mailbox overflows every day with promotional material from drug companies that proclaims the benefits of the latest cure-all. Sometimes the material is cleverly disguised as a press release, often with the words “important breakthrough” blazoned across the top. Seldom, though, are these genuine breakthroughs. In most cases they are variations on a theme: similar medications with a different set of side effects than the ones already on the market. Late last fall, for instance, Immen received a so-called breakthrough announcement from a company that made a migraine pain reliever in the form of a nasal spray called DHE. Immen realized the same drug had been around for 45 years and DHE was just a new way of administering it. “There are a number of stories that I haven’t written because I found them too blatantly a pitch for a drug that isn’t even new,” he says. “It seems as if they are trying to use the press to promote their products.” In fact, on the CTV News later that evening, the drug was hailed as a miracle by a neurosurgeon.

The drug companies have also found other indirect ways to reach the people who might walk into a doctor’s office and demand a particular drug. Last October, for example, a study was published in The New England Journal of Medicine on the effectiveness of a cholesterol-lowering drug for cardiac patients. After the study came out, Bristol-Myers Squibb took out a full-page advertisement in The Globe and Mail, heartily congratulating the Canadian study researchers and the men and women who participated in the study. It wasn’t exactly advertising the drug itself, but it came startlingly close.

What was more alarming, however, was the advertisement’s distressing message. The reader was bombarded with frightening facts: “2 out of 3 heart attack survivors have cholesterol levels in normal ranges” and “Most heart attack survivors are not on treatment aimed at controlling cholesterol levels.” To push the message home, the third fact was in bold type: “The CARE [Cholesterol and Recurrent Events] study will help save lives.” At this point, the poor reader, convinced that his heart is a ticking time bomb because he’s not been taking the right cholesterol-lowering drug, is ready to race to the phone and call his doctor, clamouring for the new medication.

At least in this case, the physician would be able to decide, based on the data in The New England Journal study, if the treatment is appropriate. Sometimes, however, neither doctors nor the media have a complete study to evaluate, yet the press will report on premature results nonetheless. Last autumn, some particularly promising-and fascinating-research results were released. It seems that the simple cold virus, which plunges the rest of us into the depths of sniffling misery every fall and winter, could help those suffering from cancer. The newspaper stories, taken from a study in the journal Science and reported by Associated Press in some Canadian dailies, were accompanied by astonishing headlines that trumpeted “Cold Bug a Cancer Killer” and “Docs Find Cold Virus That Kills Cancer Cells.” Glancing at the papers, it would appear that an infected sneeze or cough would be enough to attack cancer cells. Once more, though, most of the stories failed to mention that this is a complex theory, in which only one of the viruses that causes colds is first mutated and then injected into tumours. The articles enthusiastically pointed out that about 60 percent of the human tumours grown in laboratory mice disappeared after they had been injected with the genetically engineered virus. The writers didn’t emphasize the fact that this is still only a theory. Human trials just started in October, and the results will not be known until this spring. Even then, the research has a long way to go before it can show any definitive results.

The media-and their audience-may be impatient for quick conclusions, but the truth is, all scientific studies take a long time. The true Gold Standard for research is what’s called the “prospective randomized double blind control study,” in which the patients participating in the study are not told whether they are receiving a placebo or the treatment itself. Often, to avoid bias, even the researcher doesn’t know which form of treatment a participant is getting until the scientists unlock the code at the end of the study.

Then there are the different phases of trials: phase one occurs in the test tube, phase two is tests on animals and the third and final phase is human trials. Not surprisingly, reporting problems inevitably occur when the phase one and two trials are written about by the lay press. Pat Rich, managing editor at The Medical Post, says that at the annual meeting of the American Association for Cancer Research last spring, a lot of early results seemed promising and were picked up by the lay press-especially the wire services-as potential “breakthroughs,” particularly the militaristic-sounding gene bomb (a chemical injected into tumours that strategically destroys malignant cancer cells while sparing healthy cells) and a study that explored the relationship between overcooked meat and stomach cancer. What may look good in a test tube, though, may look less promising in real life. Dr. Bruce Squires, former editor of the Canadian Medical Association Journal, says, “Very few reporters understand the orderly progression of scientific information, where everything is a relative truth that has to keep being refined. A lot of the new things are just ‘me toos.'”

Even if a complete study or series of studies is available, looking carefully at the results is frequently not the media’s strong suit. Last October, a study was released that connected induced abortions to breast cancer, and the Globe reprinted a report that had appeared in The New York Times. Medical reporter Paul Taylor was disappointed that, due to time constraints, the Globe was unable to run a similar story from The Wall Street Journal, which, he says, was a much more thought-provoking and critical analysis of the study. Even though the Times report did note that the author of the study is a fervent anti-abortionist, the paper said that only 23 studies have been conducted on this link, when in reality, according to Taylor, there have been over 40 studies. “You can skew your results if you don’t look at the total data, so you have a flaw in the analysis right there,” says Taylor. The Times article also omitted an extensive study conducted by the National Cancer Institute in February 1996, which found no relationship at all between abortion and breast cancer.

Another good example of conflicting studies that weren’t adequately reported by the press occurred in March 1995, when The Journal of the American Medical Association published a study that linked the use of short-acting calcium channel blockers (for the treatment of hypertension) to an increase in heart attacks by as much as 60 percent. What the press either didn’t realize, or chose to ignore, was that Boston University’s Dr. Hershel Jick had also presented findings around the same time that were strikingly different: calcium channel blockers decreased the risk of cardiac arrest. “The press just ran with it,” complains Dr. Angell. The result, of course, was sheer panic among patients, many of whom stopped taking the drug-which can also lead to medical problems.

It didn’t end there. In February 1996, The Lancet, a British medical journal, compiled all the calcium channel blocker studies and noted that the U.S. Food and Drug Administration had deemed certain calcium channel blockers safe for the treatment of high blood pressure. Yet, six months later another worrisome report emerged in the Globe stating that this anti-hypertensive medication might increase the risk of cancer, even though the evidence was mostly anecdotal or culled from general observations of patients and might not be scientifically significant.

Obviously, different studies can propound different, often conflicting, points of view. They should be seen as an informed debate, and treated that way, but the press frequently assumes a single study is the final word on the matter. Medical journals are not medical textbooks, however, and the contradictory studies have to be put in their proper context. Far from being confused, most of us would find it helpful to read about different viewpoints of a piece of medical research. Paul Taylor likens conflicting journal studies to debates between opposing parties in the House of Commons. When people hear one politician haranguing another, they assume that both people are expressing their opinions, not the ultimate truth. But as Taylor points out, when readers hear about a study in a journal, they tend to forget that most research is itself a point of view, a piece of a puzzle, and not the whole picture.

For their part, Dr. Angell and Dr. Squires read most popular media accounts skeptically. They both believe that for an article to be truly understood, truly worthwhile, it is always best to have the original journal article beside you. As physicians, however, their expertise and education enables them to do just that. For the lay reader, on the other hand, most of the articles in medical journals can be extremely dull, complicated and full of arcane facts-certainly not the stuff of gripping banner headlines.

Perhaps in an attempt to spice up what may look like a dull story, some reporters build their articles around the idea of breakthroughs, miracle cures and epidemics. The word “epidemic” is often used loosely by the press; its real meaning is a highly contagious disease that affects a large percentage of the population at the same time, like polio, typhoid or the Spanish flu. The last real epidemic in Canada was the outbreak of Spanish influenza in 1918. According to the press, though, the latest epidemic is drug-resistant bacteria. Stories have been told of patients entering a hospital for a routine procedure, only to be invaded by mutant bacteria that the array of modern antibiotics is powerless to stop.

Certainly, drug-resistant bacteria are a concern, but they are not an epidemic, although that would be hard to fathom looking at the September 9, 1996, issue of Maclean’s. The cover story, entitled “Outbreak,” was accompanied by several photographs of brightly coloured strains of bacteria magnified under a microscope. “How bad could it get?” wonders reporter Mark Nichols. “Terrifyingly bad….” The article reads like a Michael Crichton novel, with references to “superbugs,” “epidemics,” “mutating microbes” and a “doomsday bug” and stern warnings from concerned microbiologists and epidemiologists about the “profligate use of antibiotics” that enables bacteria to change into drug-resistant forms. In the case of vancomycin-resistant enterococcus (a strain of bacteria resistant to most antibiotics, including vancomycin, a drug that doctors prescribe as a last resort), Nichols says that “it is probably gaining ground in Canada, but no statistics are available.” How can there be an epidemic raging in our midst without statistics?

In addition to the obvious sensationalism and fear-mongering, the article has several other problems. According to Nichols, physicians and patients are responsible for this pernicious pestilence. People have come to the erroneous conclusion that antibiotics are a cure-all, and insist on going from one doctor to another until they get a prescription for penicillin to treat a common cold or flu. Admittedly, there is some overuse of antibiotics, but most patients who are prescribed antibiotics are legitimately ill with a bacterial infection that, left untreated, could spread deep into the body’s tissue and cause a secondary (and potentially fatal) infection. Occasionally, people don’t take antibiotics correctly; their vim and vigor return and they stop midway through a course of treatment, giving the bacteria the opportunity to thrive and attack again. But, like many other areas of medicine, the explanation for drug-resistant bacteria is far more complex than Nichols’ article allows.

Nichols does admit that most of the patients who have contracted this disease are already ill, but he fails to define how drastically sick they really are. If the immune system is compromised by severe illnesses such as AIDS or cancer, then it cannot effectively fight any bacteria. Some forms of chemotherapy suppress the immune system, which means that cancer patients are already at risk of contracting an infection. And along with his rather vague definitions, Nichols also mentions the notorious “flesh-eating disease”-again, a misleading term popularized by the lay press. Despite the widely used name, bacteria do not devour flesh. They release toxins that cut off the blood supply to the soft tissue, whereupon the flesh turns a gangrenous black and dies. Then again, “flesh-eating” is more of a headline-grabber than “necrotizing fasciitis.”

Nichols is not alone in his careless use of medical terminology. Inventing a dramatic phrase like “flesh-eating disease” is only one example of many journalists’ casual use and misuse of language in medical reporting. A sound medical story will use qualifying words such as “may cause” or “can increase the risk of” rather than making sweeping statements such as “fibre prevents cancer” or “red meat causes colorectal cancer.”

Dr. Candace Gibson, a pathologist at the University of Western Ontario who also teaches medical reporting to journalism students at Western and has worked on the Discovery Channel and CBC’s Quirks and Quarks, laments the misuse of statistics and loaded terms like “cause” and “prevent.” But more accurate language is not the only solution to poor medical reporting. Dr. Gibson is also concerned about what she calls the “breakthrough mentality” of the media. Even though a new drug has “gone through all the hoops that Health Canada requires,” she says, “the public is a testing ground, and there will always be side effects that show up when huge numbers of people start to take the drug.” Dr. Gibson adds that editors don’t want stories fraught with ifs, maybes and other tentative-sounding words. Science and medical issues often don’t fit into hard news reporting, she points out, whereas if a newsworthy event occurs, “bingo, you just describe the event.” And unlike most traditional news stories, medical reports seldom receive follow-up articles, which then compounds the confusion.

One of the root causes of this situation is that both the press and the public prefer to believe that science can come up with the “right” answers to questions that have mystified medical practitioners for centuries, even though science cannot ever be completely right. Rarely is there a definitive truth to any medical conundrum. Scientific theories are constantly being revised and retested, much to the dismay of the public, who want to find out once and for all whether hormone replacement therapy prevents Alzheimer’s disease or causes breast cancer.

Reading most stories on the subject, it would be hard to know for sure. A front-page story in The Toronto Star, for instance, announced that “Study Finds Estrogen Saves Lives.” The wire-service story stated, in part, “Over-all mortality rate for users was 46 percent below that of non-users…and most of the benefit was connected to preventing heart attack and stroke.” It was an erroneous, if not absurd, statement that could lead readers to believe estrogen miraculously preserves life for all eternity. The second-last paragraph then noted, “There was a slightly higher rate of breast cancer death among estrogen users.” All of this conflicting information can, of course, be mind-boggling for a woman faced with the agonizing decision of whether to take the hormone or not. Either she will be protected from developing heart disease or she is doomed to die of breast cancer. Or, as this article appears to suggest, if she is really fortunate, she’ll achieve immortality.

Dr. Ken Walker, a Toronto gynecologist and journalist who writes under the name W. Gifford-Jones, is one of many doctors who take umbrage at such articles. Dr. Walker believes they muddy the issue with scary statistics and ignore the seriousness of other, more common aging problems such as heart disease and fractures. Menopause, he says, is not a change of seasons; in some cases it is a serious matter. One benefit of estrogen replacement therapy not mentioned in news stories is that it can strengthen bones weakened by osteoporosis. In a 1995 article Dr. Walker wrote for The Financial Post, he attempted to quell some of the fears women have about estrogen. The dangers of a broken hip, he wrote, far outweighed other problems: “…25% die during the next year, 50% are immobilized, suffering disability and loss of independence. Only about 25% return to a normal life.” Dr. Walker also reminded readers that the risk of developing coronary artery disease is greater than developing breast cancer, and there are, in fact, other studies demonstrating that some women who are taking estrogen when they are diagnosed with breast cancer live longer than those who weren’t taking the hormone.

Women may have been slightly reassured after reading Walker’s article until they picked up the February 1996 issue of Chatelaine, in which June Rogers asked the question “Estrogen Forever?” Rogers reflected on her own experience with the old, high-dose birth control pills of the early 1970s, which caused her to gain weight and weep uncontrollably. She also recounted the horrifying story of a woman who was prescribed a low-dose Pill at the age of 44 because she couldn’t tolerate standard hormone replacement therapy. A clot lodged behind one of her eyes, causing it to become dreadfully swollen and eventually resulting in slightly impaired vision. A sidebar to the story did gather up contradictory research reports and statistics, but they weren’t evaluated at all. One disturbing fact was that women who take estrogen for more than six years had a 40 percent chance of developing fatal ovarian cancer, but, Rogers counters later on, it is a very rare disease and only one percent of women will develop it. Rogers obviously tried to do her homework, but her throwing statistics together without much analysis meant the reader was left to drift in a sea of almost random facts.

Rogers’ final thoughts sounded more like a gypsy’s curse than a simple rhetorical question: “Will these powerful hormone drugs be our magic potion, poison pill-or something in between?” It’s true that medical writers are not supposed to wholeheartedly endorse a drug or a form of treatment-that would be just like advertising-but frightening women about diseases, even inadvertently, strikes fear and terror in the heart of the reader and is not responsible reporting.

Doctors, too, have played a role in creating this kind of confusion. Journalists must try to extract information from physicians and researchers who are reluctant to speak to the media, especially concerning new treatments, potential cures or the results of a study. Even though the mere mention of their work or research in an article or during the evening news can bring publicity to a research institute, university or hospital and thus attract the attention of benefactors who may be inclined to donate money for further study, physicians are worried-not surprisingly-that they will be misquoted. An even greater worry is that the reporter will not understand what the doctor is trying to say, and that the doctor will end up appearing foolish or unintelligent. Many Canadian doctors shun the media for those reasons, although in the media-conscious United States, some physicians seek the advice of professional media consultants to help them deal with journalists’ persistent, nagging questions. Like politicians, doctors are counselled on how to dress for a television interview and how to nimbly deflect a manipulative question. Even though such consultants do exist in Canada, very few physicians tend to use their services.

This medical-media standoff has been looming for years. In 1983 Dr. Martin S. Bander wrote an essay for The New England Journal of Medicine entitled “The Scientist and the News Media.” In his piece, Bander suggested scientists avoid interviews that will cause them to reveal the results of a study that has not been peer-reviewed-in other words, a study that has been rigorously scrutinized by scientists to ensure there are no flaws or gaping holes. Unfortunately, rather than endure the tedious and lengthy process of peer review, some scientists go directly to the media with their findings. Often institutions themselves encourage the researchers to hold press conferences to discuss data-even if the study is incomplete or lacks definite conclusions-because benefactors are more inclined to donate money to an endeavour that seems to be making significant progress.

If an article is submitted to a major medical journal, it will generally be subject to peer review, which ought to guard against inaccuracies and misinformation. At The New England Journal of Medicine, for example, a professional staff of close to 20 checks each manuscript not only for errors in copy but also for any leaps in logic or dubious claims made by the author. Then the study is peer-reviewed and analyzed by outside physicians and scientists who can provide an objective view of the tests and results. In addition, most major medical journals have strict rules in place to prevent researchers from going directly to the media. In 1969, The New England Journal created the Ingelfinger Rule (named after the editor of the time), which states that the Journal will not consider publishing a manuscript if its substance has been published elsewhere. Imagine the difficulty, says the New England Journal‘s Dr. Angell, for a reporter who is not trained in medicine or science to sit at a press conference where a scientist is essentially marketing his research. The reporters have to make sense of the press conference without having the primary data in front of them and without the benefit of experts’ opinions.

Dr. Angell says this extensive process of checking and testing does not always guarantee a study is reliable. Articles should also be put in context of other research on the subject, something that doesn’t necessarily happen when a medical journal prints a study. Even if a published work does refer to previous studies, journalists may not be inclined to look up other research, which in turn can lead a writer to draw inaccurate conclusions, much like The New York Times reporter who ignored several important studies on the abortion and breast-cancer question.

The problem of jumping to inaccurate conclusions might be remedied, Dr. Angell suggests, if all medical reporters had science or medical degrees. Yet is this a realistic solution? As the Globe‘s Paul Taylor says wryly, “Physicians become steeped within the mythology of their own profession and are not going to be very critical of it.” It is almost a tradition that a journalist be able to evaluate any topic: politics, business, animal husbandry in Poland or medicine. An inquisitive mind, sharp research skills and the ability to write in a lively and coherent manner are far more valuable than any medical degree, even though reporters frequently do specialize in a particular area and build up a treasury of knowledge. The job of a medical reporter is to take the jargon-laden studies and distill them down to a readable, comprehensible, informative and enjoyable article for their readers.

Good medical reporters such as Immen and Taylor have been on the beat a long time (nine and five years respectively), have immersed themselves in their subject matter and have learned from their mistakes. They take advantage of the advance copies of medical journals and contact a study’s authors to verify facts, then express them in plain, simple language. Wire-service reporters, on the other hand, who cover medicine just as competently as the beat reporters, watch grimly as editors trim their stories to the bone, excising vital content and thus creating, almost inevitably, misunderstandings, errors and distortions.

Why should we care about the quality of medical writing? First of all, of course, it constitutes inaccurate reporting, which is as important in the medical field as it is in, say, foreign news. There are significant human consequences too. Hope springs up whenever a new treatment for AIDS or cancer is announced, only to be shattered when the research proves inconclusive or the trials are unsuccessful. And people become needlessly alarmed when they read what sounds like an announcement of their imminent demise.

Which is why last November, Paul Taylor wrote “The Mind & Matter” series in the Globe on making sense of medical news. Taylor had often wondered, despairingly, how certain stories made it into the newspaper. Finally, it happened enough times that he felt compelled to do something about it. “The best thing is to provide people with the information so that they themselves can be more knowledgeable readers,” he says. Perhaps the next generation of medical reporters will come to its task better prepared. University of Western Ontario’s journalism students benefit from Dr. Gibson’s classes, and now the University of North Carolina at Chapel Hill is expanding its single course on medical journalism into a full program. Students will learn how to interpret research, new drug developments, ethics, epidemiology and malpractice. Not quite a cure-all for the ills of medical reporting, but at least the prognosis is good.