A 10-Year Checkup
Tuesday, August 1, 2006
A relative of mine was just diagnosed with chronic lymphocytic leukemia. But don't worry, this isn't about that.
This is about the quality of health information on the Internet, all that stuff buzzing around between Web servers and computer screens intended to help people manage their health. More specifically it's about how, a decade since the dawn of the I'll-just-find-it-on-the-Web era, the Internet performs when a reasonably Web-savvy guy (me) suddenly needs reliable health information to apply to a real human life. Research shows that as many as 80 percent of Internet users have searched for personal health information online, so this is not an idle question.
I braced for a barrage of bad information and too much of it -- slick pharmaceutical ads dressed up as medical advice, pitches for cures of suspect provenance, anti-medical-establishment screeds and all sorts of e-scammery.
I certainly saw all that. But I was surprised to find how easy it was under real-life conditions to find credible, useful information without advanced surfing skills. A lot of the more specialized, highly detailed material -- and the most potentially important -- was buried only a level or two below the surface.
And the garbage, while plentiful, was easy to bypass. I essentially was able to get what I needed to prepare for a serious medical situation fast and easily. Who'd have guessed?
I started by Googling the disease name. I did this not because I thought it the wisest approach, but because I've read reports suggesting most people start looking for personal health information this way.
Google corrected my spelling (nice) and disgorged the expected list of more than 2 million Web pages. But the page was topped by a set of links inviting me to "refine" the results in a number of different ways.
I'd never seen this before. I later learned that this feature launched in May and is available only for certain topics, health conditions among them. It lets users filter results by clicking on such choices as "diagnosis," "treatment," "symptoms," "clinical trials," and so on. Certain information providers ("Google Co-Op" partners, which so far include mainly government agencies, major universities and a few commercial enterprises) "annotate" their own and others' sites so they come up in response to these sub-topic searches.
The options included refining my search to information "from medical authorities." Since it's hard to imagine seeking anything else, I started there.
This produced some high-grade stuff about CLL (as the disease is known): explainers from the Leukemia and Lymphoma Society, a solid medical encyclopedia entry and very good materials from the National Cancer Institute, the Mayo Clinic, the American Cancer Society and several med schools. It also included two links to information about clinical trials of CLL treatments; a few clicks from there I found 21 trials recruiting patients, including three in Michigan, where the patient lives.
Columns of ads rode along the right-hand side of the screens, but they were easy to ignore.
I continued with Google by clicking on the results-refining option "for health professionals," figuring that would take me deeper. Did it ever.
A lot of the exhumations were difficult to read (even for a health journalist who mucks through research reports regularly). But just by skimming I quickly found things I hadn't seen elsewhere, such as this plain-spoken gem from eMedicine, a well-regarded physician's site operated by WebMD:
"The majority of patients live 5-10 years, with an initial course that is relatively benign but followed by a terminal progressive and resistant phase lasting 1-2 years. During the later phase, morbidity is considerable, both from the disease and from complications of therapy."
Yow. The consumer sites I'd seen had fudged those hard, discouraging facts.
I also found details that were unavailable in much consumer-directed boilerplate about staging of the disease (a formal designation of the disease's severity and progress). The data included key details such as blood levels associated with each disease stage.
Most valuable were the "practice guidelines" documents found under a sub-search of links for medical professionals. This was the mother lode: Links to best-practices recommendations for doctors, explaining how to diagnose and treat the condition. Difficult to read, sure, but an excellent companion for the medical adventure that lay ahead.
I returned to Google's general results. A few pages in, I found a link to an entry in Wikipedia (a promising if inaccuracy-riddled publicly authored Web encyclopedia). The main value there was a link to a site called CLL Topics, an independent site run by some really smart, dedicated amateurs who edit and present news, studies and discussions on the disease.
Google's much-vaunted News feature flunked. When I entered the disease name and clicked to search on "news," I got a couple of reports on promising research and a whole lot of items about fundraisers, stories about people living with the condition and so on. For the latest real news specific to the condition, I'd find the best stuff at CLL Topics.
The Google refine-your-search options are a work in progress, and officials say that as more information providers are invited to annotate their content, Google's technology will make sure that sites offering credible, valuable information will squeeze out the stuff published by drug peddlers and wingnuts. We'll see.
For now, though, Google's mix of technology and human judgment makes its health condition searches unusually dependable and efficient.
Feds at Work
Truth told, after all this Googling I already had a lot of the information necessary for an early CLL brainwrap. But I needed to check in with MedlinePlus ( http:/
Searching under Health Topics, I found a page devoted to Leukemia, Adult Chronic -- a clean, well-organized page topped by news (two articles, one germane to CLL, the other to a related cancer), material from the National Institutes of Health, overviews, and resources related to genetics, treatment, clinical trials, financial issues and more. Nearly all came from the National Cancer Institute, the American Cancer Society and the Leukemia and Lymphoma Society.
The most valuable document was listed first under "From the National Institutes of Health": the National Cancer Institute's "PDQ" (Physician Data Query) fact sheet on the condition, which is thorough, clear and readable. One click away is related material for doctors, which provides much of the detail I'd already gotten via Google.
The Big Dog: WebMD
Now I was really loaded down with stuff, and ready to retreat with printouts and a yellow highlighter. But I wanted to visit the dominant commercial Web site for medical information, WebMD.
Uh-oh: Searching for the disease by name from WebMD's main page, the results were topped by a menu of four "sponsored links" that occupied four-fifths of the first screen. These sent me to a chain of for-profit cancer treatment centers, to chemotherapy drug maker Amgen and to a university-related treatment center in Baltimore.
There was also something called WebMD Special Offers and Services: "Browse through the most up-to-date information on medications, medical devices, health services, and therapies from trusted and credible WebMD Sponsors."
I am no purist. This article is surrounded by advertisements of all kinds (if our sales staff has had a good week) for products and services of sometimes unknown quality. My salary is funded by ad revenues.
But WebMD's search results presented 10 information links and seven advertisements per screen. This at a moment when I was seeking information about a deadly disease suffered by someone I love. This made WebMD appear . . . mean, or at least callous. The site's credibility, which I'd never had occasion to question before, dropped a notch or two in my mind. At least they could have put the ads off to the side, for God's sake.
Back to WebMD's other results.
Sandwiched between the sponsored links were solid sources of information, many of them identical to what is found via MedlinePlus and Google search refinements. The results also included some out-of-context links for specific drugs used for the condition and information about treatments for a variety of cancers. There was one link for something called "Newly Diagnosed: Leukemia," but it was a cursory downboil of Leukemia and Lymphoma Society publications.
The sponsored links at the bottom of the first results page included one from a trial lawyer seeking clients whose benzene exposure may be related to their CLL, and another from a guy who (purportedly) found a "natural" treatment for the disease and wants to share it. I provided my e-mail address and (fake) phone number and soon received a pitch for a multi-level marketing plan for dietary supplements. (Look! I can treat my loved one's leukemia with methods rarely used by the medical establishment, and get rich at the same time!)
WebMD permits topic searches limited to "news," "Medline" (a government database of original research articles), "community" and so on. WebMD's news is the best among its peers, each article vetted by a physician knowledgeable about the condition. But the news search for CLL turned up items about cancer generally, not about the specific condition. None of the other refined searches yielded information I hadn't seen elsewhere.
I wish I could report finding some secret approach to generating high-quality information on the Internet that only lucky readers of this article will benefit from. Alas.
Fact is, judicious use of Google and its new search refinements served me very well, and Medline-Plus essentially verified the quality of what I'd gathered.
To digest the lessons I've learned:
· Start a disease search by visiting MedlinePlus. The material is carefully vetted for credibility and, for the most part, written simply enough for a lay audience. Print that stuff out and read it carefully. When it all starts to sound the same, you've got the foundation of a decent education.
· Dig into Google, using its search refinements, choosing "from authoritative sources" and "for medical professionals." Ignore the ads off to the side.
· Use Google's main results to look for a site run independently by patients, such as the CLL Topics site that I found. You'll need to make sure such sites are not commercially entangled (a lack of ads is often a good sign) and are authored by credible people with no investment in, say, upending the status quo, proving a conspiracy theory or supporting a sponsor. Many conditions have what appear to be independent patient groups that in fact are supported by drug companies and other interested parties. If you can find an unfettered electronic civic group for your targeted condition, however, it'll be one of your most valuable resources.
If you've done the above, you may not benefit much from the larger commercial health information sites, at least for diseases and conditions. In addition to first-rate news reporting, WebMD has some excellent resources on fitness, nutrition, parenting and other lifestyle health topics, plus lots of useful interactive features, like its symptom checker. But those seeking general education on a serious disease are better served elsewhere.
I know the Web offers much more than what I was looking for. There are ways to get at truly obscure information on, say, specific drugs or alternative treatments. There are social networking sites that hook up real people dealing with the condition. There are sites antagonistic to the mainstream that offer useful context and thought-food. There are opportunities to identify, and sometimes interact with, top medical specialists. There are vivid tales of the afflicted, many of them true.
We have often published in this section warnings about how much dangerous misinformation is available online. I came across plenty of it. But the simple truth is, it's fairly easy to avoid. The Internet has matured to a point where the millions of people seeking medical information can prepare themselves for a serious medical encounter with speed and confidence.
That may not be saying a lot. But, for what I needed and when I needed it, it's saying plenty. ·