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Medical Minefield: Look Before You Leap

BY MARILYNN LARKIN

Stories about the unreliability of health and medical information on the web and elsewhere are becoming nearly as ubiquitous as the information itself. The ongoing barrage of conflicting health news stories - for example, drinking is good/bad for you; vitamin A prevents/causes cancer; estrogen replacement prevents heart problems/but maybe not -- leaves everybody, consumers and professionals alike, wondering what to do next.

Bob Arnot Book One also worries about where the information is coming from and whether it has been compromised by financial dealings. The Journal of the American Medical Association (JAMA) revealed last October that results of some studies published in peer-reviewed medical journals are unduly influenced by study sponsors, including drug companies. And it was recently learned that former Surgeon General C. Everett Koop failed to disclose financial arrangements that influenced some of the content on his website, drkoop.com.

It is possible to wend your way through the glut of information and misinformation and make informed decisions about your health. But reaching that point takes effort, awareness, and ongoing vigilance. It also takes trust in your own powers of perception. If something seems like a hoax to you, it probably is. If a health news article only reports one side of a story, and you have a nagging feeling you're not getting the whole picture, you're probably right. If a story touting a particular product -- drug, supplement, or therapy -- sounds like it's coming off a press release, it probably is. And if an article about the benefits of fiber is sitting next to an ad for bran cereal, consider the possibility that the publication tailored the article to please the advertiser.

On the Internet: Whose information is it, anyway?

"It's f---ing criminal that drkoop.com or any other consumer health site with a trusted name can blend content with advertising," declares Robert Lipsyte, New York Times columnist, book author, and host of The Health Show on the MetroLearning cable channel in New York City. Lipsyte feels betrayed by Koop, a man he considered a "hero," and who wrote a promotional blurb for Lipsyte's book, In the Country of Illness. "People go to these web sites because they -- or a loved one -- are scared, sick, and need information to make informed decisions. They log on, desperately seeking something they want to think is true & only to find out later that it's not pure information, it's advertising. I find this incredibly disturbing." Lipsyte should know - he's also a cancer patient and former caregiver, and he uses the web for health information and support.

Koop site In what appears to be a response to criticism such as this, Dr. Koop on his website announces that he and his staff "concur that the providers of health care information on web sites have a profound responsibility to delineate advertising from editorial, and to provide credible, unbiased information." An "ethics update" section of the site stated that Dr. Koop has recently "called upon industry leaders" to develop standards "regarding disclosure, ethics and consumer protection for health care web sites."

Assessing health information on the Internet is more complicated now than ever before. A couple of years ago, users could safely be told to steer clear of sites with commercial sponsorship. But that makes no sense today, says Dr. Joel Goldwein, founder and coeditor-in-chief of OncoLink, the University of Pennsylvania's cancer information site. "Some high quality commercial sites are emerging as leaders in providing health content both to patients and professionals," he notes. And many nonprofit health sites are accepting commercial sponsorship in order to remain viable.

To avoid conflicts of interest, website developers should disclose all sources of funding and all sponsored content, says Goldwein. For example, when OncoLink received drug company money to cover a professional meeting, the sponsorship was disclosed on every page of coverage. Although OncoLink was free to cover whatever sessions the editors deemed important, one session was covered at the request of the sponsor -- and this was duly noted on the coverage page.

"Every site should clearly state what its advertising policy is, and what its editorial policy is in relation to that. If there's no such statement, or it's difficult to find, you should assume you're reading a paid ad, not independent editorial content," asserts John Mack, head of the Internet Healthcare Coalition.

"The Internet is not a solution, it's a tool, and like any tool, you have to train yourself to use it," he adds. The IHC is looking into the development of patient continuing education workshops for consumers, similar to continuing medical education for physicians. But rather than coming from the top down -- i.e. doctors teaching patients what to look for -- "patients must take it upon themselves to become educated," Mack stresses. For some tips on how to start educating yourself, click here.

Medical journal articles: Yours for the clicking

The web is giving patients unprecedented access to research that was formerly the province of physicians only. But with such access comes the difficulty of evaluating the findings and placing them in a broader context. If a study is sponsored by a commercial entity, this should be disclosed. But while sponsorship may influence the authors' conclusions in some instances, as indicated in the JAMA study, this is by no means always the case.

To draw your own conclusions about a study, go beyond the abstract to the full article. Another recent JAMA study showed a "surprisingly large" number of inaccuracies in journal article abstracts compared with the actual articles. (Abstracts are the short summaries that precede the articles.) When reading a journal article, look carefully at the methods used in the research. Consider whether it was done in the lab, with animals, or humans. If people were involved, check to see how many, and for what period of time. Giving this kind of attention to medical studies is, of course, difficult and time-consuming -- but sometimes necessary as well.

Also pay particular attention to the introduction, discussion and conclusion sections, since this generally is where authors qualify their findings and place them in context with other work in the area. If the study results do not confirm previous research, be cautious about accepting the findings.

Newspapers, magazines, and books: Hype and omissions

"It may come as a surprise to many of the women who rely on magazines for health information to learn that lung cancer, not breast cancer, is the leading cause of cancer death among women in the United States," says Dr. Elizabeth Whelan, president of the American Council on Science and Health, a consumer watchdog organization based in New York City. ACSH honored Vogue on March 30, 1999 with its first-ever "Shattering the Smoke Screen of Silence" award for publishing an article that dealt with the dangers of smoking. Previous ACSH analyses of health articles in women's magazines revealed that most downplay the hazards of smoking -- presumably because they don't want to offend their tobacco company advertisers.

In addition to permitting the agenda of advertisers to influence copy, health articles in the popular press tend to be headline-driven (years ago, when I wrote for women's magazines, I was given 23 assignments in one sitting based on headlines alone; my task was to create articles to fit the coverlines). Depending on the publication, a writer might also be asked to write "to the lowest common denominator" -- meaning someone with an eighth-grade education. The result can be oversimplification, presentation of only one side of a story, and relentlessly upbeat coverage (such as not mentioning possible adverse effects of medication).

Nor are health books immune to such problems. Dr. Bob Arnot was taken to task late last year for presenting misleading information in his "Breast Cancer Prevention Diet " book (not the least of which was the book title itself). In a spate of press coverage spurred by an ACSH investigation, several researchers cited in the book said Arnot had misstated and/or overstated the results of their work, and patient support groups decried the fact that the book implicitly blamed women for their cancer if they didn't follow Arnot's "life-saving" diet. The reality is there is no scientific evidence that any specific diet can prevent any specific cancer.

Arnot later admitted he should have used the term "risk reduction," not prevention.

Television and radio: Simplistic sound bytes

Arnot is only one of numerous "media doctors" whose statements should be regarded with healthy skepticism. "I don't really trust these doctors because they all have producers whose main concern is to bounce out whatever happens to be the 'hot' topic of the day," says Lipsyte. "It's difficult and expensive to do real investigative reporting, and so very few shows actually do it." Some television stations even run video press releases produced by ad agencies for health and medical clients, and present them as legitimate news without disclosing their sources.

At the least, broadcasters should strive present a balanced story with more than one point of view. When Lipsyte had a guest on his show who talked about a near-death experience, he also had a doctor who had a neurological explanation for the event.

"When it comes to healing or getting health information, the bottom line is that we are the ones in charge," says Lipsyte. "It's not easy. We have to do homework and research, and select our health websites and other sources of information before we desperately need them. When the crunch comes, go to more than one source, cross-reference the information, consult your doctor, and talk to other people going through similar situations."

Marilynn Larkin is a contributing editor to The Lancet, and co-author of Writing on Health Risk: A Handbook for Journalists, published this month by the American Council on Science and Health.


 
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