Are you confident you can assess the quality of the healthcare information you find on the Internet? Maybe you shouldn’t be. Experts who study online search practices are finding “rampant malpractice” among America’s health seekers. In this installment of “The Good Patient,” I explore common mistakes health consumers make and steps you can take to prevent them. Also, I introduce the best online health source you probably never heard of.
Traveling the Internet with
A Librarian as Your Guide
Remember when you needed to look up information on an unfamiliar topic and went to a librarian for help? If you looked slightly flummoxed but not deranged, the librarian would take you by the hand and show you all the reliable information you needed, while steering you away from misleading or out-of-date sources that would have gotten you in trouble.
Now virtually everything the librarian wanted you to see can be found on your home computer, which would be wonderfully convenient if all the credible facts and data weren’t mixed up with sales pitches, obsolete studies and other nonsense. How do online health seekers sort through it all? Turns out not very well, according to researchers at Stanford University’s Persuasive Technology Lab, the Pew Internet & American Life Project and Consumer Reports’ WebWatch.
http://www.credibility.standford.edu/
http://www.pewinternet.org/about.asp
http://www.consumerwebwatch.org/about-consumer-reports-webwatch.cfm
All three research groups have been analyzing online search practices over the past several years and finding that, while most of us are satisfied with our ability to find medical information online, we are not doing a good job of assessing the quality of that information. And it’s not because we don’t have medical backgrounds to interpret healthcare recommendations. The problem is that most of us don’t bother to ask basic, commonsense questions about the information we find: What’s the source? When was it published? Who stands to benefit from the information?
More Searches, Less Scrutiny
While they aren’t hard questions to ask, the Pew Foundation has found that only about 15% of e-patients (a term coined to describe Internet health searchers) say they “always” check the date and source of material they read online, and another 10% say they do so “most of the time.” In 2001, half of surveyed e-patients said they rarely, if ever question the source and date of online health information. By 2006 and 2007, the proportion had jumped to three-quarters. http://www.pewinternet.org/topics.asp?c=5
WHY IT’S IMPORTANT TO CHECK
SAYS WHO - Knowing the source of information – who published it and why – doesn’t guarantee accuracy but it can help gauge reliability, according to the National Library of Medicine (the information branch of the National Institutes of Health). You don’t have to be a medical expert to think critically and raise questions about objectivity and credibility. For example, a testimonial of an individual patient, though compelling, may not reflect the experiences of other patients. An advertisement from a company, however persuasive, may minimize risks and exaggerate benefits of products or treatments the company is trying to sell. A news report, even if unbiased, may over-simplify facts and over-dramatize conclusions.
WHAT A DIFFERENCE A DATE MAKES -“Out-of-date information can be hazardous to your health,” the National Library of Medicine warns. While some medical studies remain valid for years, others can become obsolete overnight in the wake of a single new finding. To be certain that any healthcare information is based on the latest and best available evidence, the Library of Medicine and the Medical Librarians Assn. urge consumers to look for websites that not only document their sources but also date and regularly update news reports, advice columns, statistical data and other published materials.
The lack of scrutiny on the part of Internet users would not be of concern to experts if patients relied on reputable medical websites for their healthcare information, but many health seekers – two-thirds of regular e-patients and over half of patients with chronic conditions – begin their searches on search engines, according to a 2007 Pew survey. http://www.pewinternet.org/PPF/r/222/report_display.asp
Using a search engine to locate health information might be a sensible strategy if health seekers knew how search engines prioritize their results, but, according to Consumer Reports’ studies, most Internet users make assumptions about search results that may or may not be true. http://www.consumerwebwatch.org/search-engines.cfm
Popular search engines like Goggle or Yahoo! can produce a list of “links” to thousands if not millions of sources on most any health topic. While the lists can span hundreds of computer-screen pages, the typical health seeker never goes beyond the first page of listings, operating on what Consumer Reports’ WebWatch describes as “blind trust in search engines to present only the best or most accurate unbiased results on the first page.”
Many of the web addresses that appear on the first page of a search list are paid advertisements, a fact that escapes notice of many Internet users. Even though it’s “common practice” for search engine operators to offer advertising incentives to website owners, a Consumer Reports’ survey of 1,500 adult Internet users found that over 60% were “unaware that search engines accept fees to list some sites more prominently than others in search results.”
FTC Demands Clearer Labels
The Consumer Reports’ study was conducted in 2002, a year after the Federal Trade Commission directed search engine owners to start informing the public about the role advertising plays in their search lists, and make “clear and conspicuous” distinctions between paid and unpaid listings. Yet, the distinctions evidently weren’t clear enough for experienced e-patients in a 2003 WebWatch study. In two out of every five searches, study participants ended on paid sites without realizing that’s what the sites were. http://www.consumerwebwatch.org/search-engines.cfm
In 2004 and again in 2005, Consumer Reports analyzed the Internet’s 15 most-trafficked search engines and concluded that in all subject areas “some engines have gotten worse in their efforts to describe their business relationships with advertisers and how those relationships may or may not affect the objectivity of search content and results.
“Many search engines have switched from once vivid disclosure and hyperlinks to less visible, muted versions, and some sites have stripped away disclosure links altogether,” the 2005 study said. http://www.consumerwebwatch.org/search-engines.cfm
It should be pointed out that just because a website owner pays to get priority placement on a search engine list doesn’t mean the website is automatically biased or unreliable. Some of the most reputable medical organizations pay sponsorship or advertising fees for priority placement on search lists. Yet – this is a key point to remember – just because a website appears at the top of a search list doesn’t guarantee it’s a reputable site, either. The first pages of search engine lists are full of companies peddling wares and would-be experts espousing cures.
“The issue here is not the ethics of advertising,” the Consumer Reports’ study said. “The issue is about knowing which is which” – which sites are paying for priority placement and which are showing up at the top of search lists for other more objective reasons.
Popularity an Unreliable Measure
Search engine owners won’t reveal what their search criteria include, arguing that such matters should be considered proprietary information. But computer experts speculate that user demand, or popularity, plays a role in the rankings. According to this view, the more “hits” or visits a website gets, the higher the website will appear on a search list. Yet, the converse also is true: The higher up on the list that a website’s address appears, the more visitors the website is bound to get. Call me cynical but I can’t help but think there’s a disconcerting self-fulfilling logic to the whole system.
What’s more, if popularity is a factor, it may not bode well for healthcare consumers. If you are shopping for a car or washing machine then the experiences of other consumers can be extremely helpful, but if you’re looking for healthcare information, the assessments of your fellow health seekers may actually lead you astray.
That is one conclusion that can be drawn from research done at Stanford University’s Persuasive Technology Lab. The Stanford researchers asked health experts and a group of about 2,700 health consumers to judge the credibility of the same healthcare websites. While both groups said they valued the same standards of credibility – namely, truthfulness, objectivity and privacy protection – health experts and health consumers focused on entirely different issues when looking at actual sites. The experts zeroed in on two issues: the “name reputation” and the “motives” of the sites’ operators, affiliates and sources. The consumers tended to be preoccupied with layout, typography and color schemes – in other words, the sites’ visual appeal. http://portal.acm.org/citation.cfm?doid=997078.997097
Looking in All the Wrong Places
I don’t know about you but reading this, I’m beginning to lose confidence in the critical thinking skills of my fellow health seekers. If the Pew, Consumer Reports and Stanford studies are to be believed, many health consumers are looking in all the wrong places, asking all the wrong questions (if they are even bothering to ask questions) and leaving themselves vulnerable to untested ideas and unscrupulous sales pitches. What’s worse, they’re blithely moving around this wonderful World Wide Web as if nothing were amiss.
There’s little doubt all of us want the best healthcare information available. There’s also little doubt we can find it just by looking. The question is, will we know it when we see it?
As a journalist who has written about medicine for many years, I’m often asked, “Who’s the ‘best’ doctor?” “What’s the ‘best’ hospital?” Yet, rarely does anyone ask, “Where’s the best source of information?” It’s too bad because knowing the answer to that question is the key to finding answers the other two questions, and dealing with virtually every health-related issue that can arise over the course of a lifetime.
When I first sat down to write this column, I thought I would be putting together a list of my nominations for the best medical websites, but after seeing these studies, I realize the last thing healthcare consumers need is another list. Anyone who uses the Internet can find plenty of lists. What’s harder to come by are the tools and training to assess the timeliness, trustworthiness and usefulness of the information that’s in those lists. What we really need are our own personal medical librarians on call whenever we go online.
Think Like a Librarian
The next best thing to having your own medical librarian is to learn to think like one, which you can start to do on MLANET, a website operated by the Medical Library Assn. http://www.mlanet.org/ If you’ve never come across this website or heard of the Medical Library Assn., don’t feel bad. I’ve been a medical and education writer for over 20 years, have a close friend who is a medical librarian and didn’t know about this website myself until a few weeks ago when I stumbled upon it while doing research for this column. (With all the thousands of health-related searches I’ve done over the years, I can’t help but wonder why MLANET never popped up on the first page of any of my search-engine results before. Does it not pay advertising fees to search engine operators? Is it not popular enough among searchers? Whatever the reason, it’s too bad because, as far as I’m concerned, this has to be one of the best healthcare websites available today.)
The MLA is a 110-year-old organization representing more than 1,200 institutions and 3,800 professionals in the health information field. Though aimed at professional librarians, the “For Health Consumers” section of the website (in the upper right hand corner of the home page) offers health seekers of all levels, novice through advance, training in information gathering and assessment.
Decipher ‘Medspeak’
To start, there are several useful glossaries. One, called “Deciphering Medspeak,” explains a whole range of medical terms from acute to zygomatic, which you are likely to encounter in your health searches and also when listening to your doctor.
If you’ve ever been curious about the meaning of all those unreadable little squiggles on the prescriptions your doctor gives you, take a look at “Rx Riddles Solved!” This glossary of the shorthand used between physicians and pharmacists defines terms like, a.c. (before meals), h.s. (at bedtime), per os (by mouth), qd (every day), qh (every hour), etc.
Also, there is a short glossary of computer terms, which you have probably heard but may have forgotten their meaning: robots, spiders, Boolean Logic, natural language, truncation, metasearch engine, etc. If you want to know more about how search engines work, there is a lesson on the subject. (It is brief, of course, since not much is publicly known about the inner workings of search engines.)
A much more detailed tutorial is available on assessing the quality of online medical information. This tutorial is definitely worth reading. It will make you a better healthcare consumer and probably break you of some bad habits you didn’t realize you have – like forgetting to check the sources and dates of all the information you find online.
Required Reading
If you want to learn more, there are links to other educational resources, including a remarkable 16-minute online lesson from the National Institutes of Health Library of Medicine. This step-by-step guide shows how to do a complete examination and diagnosis of any health-related website.*** For experienced Internet users, it serves as a wonderful refresher course. You can speed-read your way through if you really know your stuff. Whether you are new to the Internet and the world of health information or an old hand, you may find yourself wanting to revisit this site just to be sure you haven’t forgotten something. Eventually you won’t forget because these techniques will become second nature.
Expert Sources
If after all of your training and hard work, you still want a list of the best websites and details about what they cover, the Medical Librarians’ Assn. publishes two.
The first is the MLA’s “ ‘Top Ten’ Most Useful Consumer Health Web Sites”:
Centers for Disease Control (www.cdc.gov)
Healthfinder (www.healthfinder.gov)
HealthWeb (www.healthweb.org)
HIVInSite (http://hivinsite.ucsf,edu/)
MayoClinic (www.mayoclinic.com)
Medem (www.medem.com)
MEDLINEplus (http://medlineplus.gov)
National Women’s Health Information Center (www.4women.gov)
NOAH: New York Online Access to Health (www.noah-health.org)
Oncolink: A University of Pennsylvania Cancer Center Resource (http://oncolink.upenn.edu)
The second, from CAPHIS, the MLA’s consumer and patient information division, is a “Top 100 List” of medical websites. It is divided first into broad patient categories (women, men, parents & kids, seniors), then by disease (cancer, HIV/AIDs, heart disease, diabetes, etc.) and finally by topic (drug information, clinical trials, etc.)http://caphis.man lanet.org/
If you want to know what medical websites to avoid, you might consider looking at Consumer Reports WebWatch ratings. Applying a rating system similar to one it has used on consumer products for decades, Consumer Reports has used teams of experts – in this case, doctors, healthcare industry executives, medical librarians and health website senior producers and executives – to evaluate the Web’s 20 most-read health information sites http://www.healthratings.org/2007/index.htm. WebWatch has also rated the most popular pharmacy sites http://www.healthratings.org/index.htm and the 20 top diet sites http://www.healthratings.org/2006/index.htm.
In 2007, only six of the 20 most popular health information sites got “excellent” ratings, while five were rated “mediocre or worse.”
Consumer Reports summarized its findings this way:
“*The best sites offered a clear distinction between editorial content and sponsored content.
“*Sites rated ‘Excellent’ included unbiased, peer-reviewed content written by health professionals.
“*Sites rated ‘Fair’ and ‘Poor’ often failed to disclose that health content and surveys were sponsored by advertisers, published ‘sponsored content’ that did not appear distinct from site content, or did not clearly display policies to correct false, misleading or incorrect information.”
Essentially the standards used by both Consumer Reports and the Medical Library Assn. are an elaboration of the three commonsense questions so many patients forget to ask about healthcare information: Who’s the source? (Is the source knowledgeable and reliable?) What’s the date? (Is there a system for updating information and correcting errors?) Who stands to benefit? (Will companies or individuals make money or have their reputations enhanced? Will patients be better or worse as a result?)
Just because you get a “wrong” answer to any these questions doesn’t mean the information itself is wrong. It does mean you need to remain skeptical and look at other sources to get more information.
Anne C. Roark, based in Los Angeles, is a feature writer for med3q.
***FULL DISCLOSURE
If you’ve been paying attention, you may have some questions about the credibility of the information in this column. While the date of the original posting is included, there is no indication of when or if updates will be published. There is also no written policy about how errors are corrected or if the content has been reviewed for accuracy and fairness. The writer of the column is not a physician so any medical advice is not reliable and should be ignored. Because the writer is a journalist, the information in the column is likely to be unbiased but could be over-simplified or exaggerated, so it is advisable to read the studies yourself and reach your own conclusions with the help of your doctor or other medical experts.
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