June/July 2003: Bad News and Good in the Information Age
Just before Easter, a savvy, intelligent, well-traveled man asked me whether I'd be willing to have lunch in New York's Chinatown, given "the risk of SARS." A couple of weeks later, some friends, immigrant Chinese artists, traveled from New York City to a south New Jersey middle school to teach a weeklong curriculum of dance, painting, acrobatics, and calligraphy, a course they have taught for several years at this school. This year, they were turned away by the principal and the school was reportedly washed down with Lysol after their departure. Guess why. Never mind that all were healthy, none had traveled to China within the last 2 years, and none had received any visitors from China recently either.

How could so many apparently intelligent people be so misinformed? Where had they been getting their information? Well, everywhere, of course.

The amount of uncensored medical information available to everyone nowadays is astonishing, primarily because of the Internet, but also owing to the growing popularity of all things medical in the popular press. The New Yorker regularly publishes detailed essays about medicine and surgery that take us deep into the doubts of medicine, leading readers to an understanding of the medical mind from the inside out. The public is made privy to our regrets and uncertainties, learning, for example, that the intern who just inserted the chest tube as if he'd never done it before really had never done it before. The New York Times Magazine publishes mundane case reports in which it is not the doctor who is the hero but the patient or his family who suddenly and accidentally supplies the wee piece to the diagnostic puzzle. So everyone has the opportunity to see how much of the practice of medicine is guesswork.

Oh sure, medical material has been taken up by the popular press for a long time, but now the amount and type of information have conspired to create, by turns, a haughty and paranoid public. Nowadays we have an instantaneous dissemination of information from halfway around the world, allowing us to peek into the closets of the global public health bureaucracy and get a glimpse at each ill-fitting hypothesis as it falls off the hanger. With direct-to-consumer advertising, we can even tell our doctors what to prescribe for any number of diseases and disorders we may or may not have. We know more and also less about all things medical, including the fallibility of medicine. And everyone has an informed (or ill-informed) opinion.

As a nurse, I have always been inclined toward educating the public, demystifying medicine, empowering the patient. But I think the amount of poorly filtered information has so demystified medical and public health practice that it has spawned an overconfident public that thinks it knows better than the authorities. We have become paranoid with the abundance of indiscriminate information and suspicious of some of our most respected public health institutions, especially when their answers shift and change, and all of us, lay and professional alike, hear all of their shifting answers.

Furthermore, it seems that those on the front lines aren't receiving (or accessing) accurate information from medical sources either. Those of us who should be equipped to reassure the public, to assess the risks and probabilities, seem just as perplexed as our neighbor on the street. More than half of physicians who responded to a Medscape poll taken during the apparent height of the SARS epidemic (and the barrage of information) felt ill prepared to even recognize or screen, much less react to a suspected SARS case.

Where have we medical media folks gone wrong? I wish I had an answer to this question...even a viable hypothesis. If you Google "SARS," more than 3 million possibilities pop up (including the South African Revenue Service). But just looking at the first several screens of medically related SARS information brings the seeker to 2 kinds of sites -- news sites and medical-information sites that universally link to CDC and WHO information.

The news sites provide their information in short, easily read, compelling formats that target everyone. The stories are valid, the facts are there, the headlines are punchy if occasionally misleading and sensational.

The medical sites are more cautious, if only slightly more -- they're looking for page views and click-throughs just as are the news sites, so they (we) aim to tantalize, too. We've all gotten used to that -- I myself write titles that I hope will compel you to link to my columns. But once inside the articles, the information is conveyed responsibly and comprehensively. The first time I looked for information about SARS, I did notice that the signs and symptoms -- what we all need and want to know -- were not readily apparent or easily accessible on any Web site. They were there, somewhere, but I had to dig to find them. So the only answer I have found to the problem of lay and professional alike being misinformed and ill prepared to recognize who and what pose a risk for the epidemic du jour is that the section on signs and symptoms should be clearly labeled and presented at the top of the screenful of links, rather than buried down below after all of the juicy news article. And, given short attention spans, maybe our titles and headlines should be less sensational.

On June 11, 2003, Medscape presented SARS: Here Today, Here Tomorrow, a CME program that brought together experts from CDC and the American Public Health Association for a live, interactive Web conference. When I began this column, I didn't know that this program was in development by our Infectious Diseases and Pulmonary Medicine sites, and when I saw the announcement -- I hope my colleagues will forgive me -- I thought it would be more of the same, with news and links to CDC and WHO. I couldn't have been more wrong. It is the Internet at its best. If you have any interest in SARS, you should check this out. Among many other things, you will find the case definition, clinical characteristics and idiosyncrasies, diagnostic clinical and laboratory criteria, and discussions of 4 cases to help you recognize, screen, and rule out SARS if you think you see it. It's a terrific program and a herald of more such practical and exciting Web casts to come.

As always, let us know what you think about these ideas. Or, if you have comments or questions about the site, please contact me at neuroeditor@webmd.net.