Consumer Health Web Sites

Internet columnist Leslie Walker will examine consumer health Web sites' credibility, privacy policies, ease of use, design, advertising sponsorship and ratings.

From The Post:

In Tuesday's article " Sites for Sore Eyes (Legs, Etc.) " (Post, June 21), Elizabeth Agnvall, special to The Washington Post, reports:

"Consumer Reports WebWatch, an arm of the Consumers Union publishing empire, has begun rating the 20 most-trafficked health information Web sites. The ratings -- posted on a new early release Web site, http://www.healthratings.org/ , that was undergoing evident birthing pains last week-- were produced in collaboration with the Health Improvement Institute (HII), a Bethesda-based nonprofit."

A transcript follows.

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Leslie Walker: Hello out there. I'm going to spend an hour answering your questions about how to evaluate health sites--or Web sites in general, for that matter.

So send in your queries now. No question is too dumb or silly. Fire away!

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Bethesda, Md.: Do you think this Web site ratings project is a good idea?

Leslie Walker:

Yes, definitely. I commend Consumer Reports for trying to evaluate health Web sites. It's a royal pain typing "pancreatic cancer" into the Google or Yahoo search box and sifting through the gazillion sites that pop up. That's pretty much how most people look anything up these days. The Web is in dire need of more human-edited evaluation systems.

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Washington, D.C.: Did Consumer Reports do a good job evaluating health sites, in your opinion?

Leslie Walker: I am afraid Consumer Reports missed its mark. I spent an hour clicking through its evaluations and looking at the sites it rated at the new Consumer Health WebWatch site:

http://www.healthratings.org

I don't feel the ratings told me much about the sites that would help me. And it left out a lot of important information, such as who owns each site. And ironically, its own site design is mediocre and occasionally annoying, in my humble opinion.

Rating Web sites is much harder than it looks. You can't just say "I like this design" or "this one confused me." These evaluations waste a lot of time on site design issues without telling us much.

The raters also wasted space giving us each site's mission statement in its own words, which typically is marketing hooey. What they need to provide is the editor's own summary of what these sites have to offer.

And finally, it's a major omission not to comment about the accuracy or reliability of information on each health site. That's what users really want to know!

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Toronto, Ontario: Do you think that consumers will use WebWatch? Won't they just continue to use Google and Yahoo (for example) just as they always have? If that's the case, what's the value of this site?

Leslie Walker: Consumers may use it once to check it out if it's marketed effectively. But I doubt anyone would return to the Consumer Reports WebWatch health using Google and Yahoo.

BUT there are plenty of alternatives that are more effective for finding and evaluating health sites.

Check out Forbes Best of the Web, for example.

http://www.forbes.com/bow/b2c/category.jhtml?id=181

Forbes magazine does this feature every year, and I consider the summaries it puts online a model of how it should be done. The editors tell you succinctly what is good about the site . The health section is well done.

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Washington, D.C.: The article in The Post today suggested Consumer Reports has a conflict of interest in rating health care sites, since it has several of its own health information sites and sells access to one. Do you see any ethical conflict?

washingtonpost.com: Sites for Sore Eyes (Legs, Etc.) (Post, June 21)

Leslie Walker: Theoretically, there is the potential for a conflict, but in reality, I don't see one. Consumer Reports is one of the best evaluators of consumer products. Since consumers are spending more time on Web sites, they really do need more credible sources to help them pick the best.

So I applaud Consumer Reports for tackling evaluations. I am confident the editors who evaluated these sites are not the ones running the health site subscription business that Consumer Reports' parent company also owns.

Most reputable print publications have well established dividing lines between business and editorial operations. Wish I could say the same for the Web!

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Washington, D.C.: I've looked up a lot of health/medical issues on the Web -- different family members have had everything from sports injuries to organ transplants to cancer -- and I've tried to be a discerning user when it comes to information gathering. I trust .edu sites or .gov sites (NIH, for instance) more than .com sites as a rule. It seems that a lot of the .com sites are really advertising sites for drug companies or doctors offices. Outside of that, how easy is it to identify "legitimate" information?

Leslie Walker: Excellent points. It's very hard to figure out what is objective or reliable or accurate at ANY Web site, not just health sites. I agree many .com health sites are marketing tools for drug companies and doctors. One of the top trafficked sites in the WebWatch project is the Pfizer site, for example. Another is by the Aetna insurance folks.

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Alexandria, Va.: Do most of these health sites collect personal information about visitors? How trustworthy are they from a privacy point of view?

Leslie Walker: Privacy policies vary widely. Moreover, the disclosures on many of these sites don't really disclose much. Some do collect personal information. Others, such as Drugs.com, insist they don't create a personal profile. WebMD has such a lengthy privacy policy with so many ifs, ands and buts that it give me the willies reading it.

It's safe to assume that any time you register for a Web site, you have submitted that information into a database that is going to have a very long shelf life. And if you are a young person, you should be even more leery of giving out your real name and any personal information to any site, because it could wander around in cyberspace for the rest of your life and come back to haunt you.

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Washington, D.C.: From the beginning ... how do I start looking for quality health Web sites? Thanks!;

Leslie Walker: There are many good starting places. Some librarians run an excellent guide to the Web with a health category:

http://web.mel.org/index.jsp

The most heavily visited health site is NIH's, another popular starting point:

www.nih.gov

You could also go right to the site's PubMed database: www.ncbi.nlm.nih.gov/entrez/query.fcgi

WebMD is popular but not one of my favorites:

www.webmd.com

For advanced health care research tools, try Subimo:

www.subimo.com

And Yahoo Health offers an excellent guide to health resources online:

http://health.yahoo.com/

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Bethesda, Md.: So where else can people go to get evaluations of Web sites?

Leslie Walker: One of my favorites is Alexa. It ranks sites by the amount of traffic they draw and offers a "site info" button stating what it knows about each site, such as the number of daily visitors, what other sites link to it, how long it's been online, and an email contact for its owner. It also offers user reviews. Amazon.com bought the site but hasn't made it too commercial--at least not yet!

http://www.alexa.com/

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Washington, D.C.: The recent Pew Internet and American Life survey reported that very few consumers who searched online for health information would check their sources. Do you believe that health websites, which contain important information that consumers act on, should be forced to comply to some guidelines or more clearly source their information?

Leslie Walker: Forcing Web sites to do anything is tricky business, because the Web is a global network of networks and hard to regulate.

But I do wish there were guidelines for news and information sites about differentiating ads from editorial content --and about clearly stating the source. Blogs need some guidelines, too. I expect these guideliness will be developed by online journalist and publishing associations over time.

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Alexandria, Va.: IS there a site you can recommend for researching cancer treatment?

Leslie Walker: I don't recommend any sites in particular; health is not my specialty. There are many cancer-specific sites, however.

You could start with the American Cancer Society (www.cancer.org.) Oncolink is another (www.oncolink.org.) Also People living with Cancer (www.oncology.com)

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Vienna, Va.: Hi! Thanks for doing this chat about online health. I have so many questions I don't know where to start!

Where can I go to find a discussion group about a particular disease? Is it risky to join one of these groups and talk freely about your ailment to strangers online? What are the potential downsides? How can you protect yourself against them?

Leslie Walker: There are so many different email and Web support groups for particular diseases. Forbes lists a few of the better ones:

http://www.forbes.com/bow/b2c/category.jhtml?id=181

There are always risks in chatting with strangers online, but my friends and loved ones who have joined online support groups for particular illnesses have told me they consider it life-changing. The benefits, at least for them, far outweighed the risks.

I think you protect yourself by using common sense and not meeting strange people in the middle of the night at roadside bars!

;-)

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Washington, D.C.: Are all of the Web sites that Consumer Reports evaluated free to use? Are there similar websites that charge a fee to get more detailed information?

Leslie Walker: I am not sure about this. All those rated by Consumer Reports appear to have mostly free content, though some may charge premiums for certain material. And yes there are plenty of Web sites charging fees for more detailed info.

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Lincoln, R.I.: Don't forget MedlinePlus ( http://www.medlineplus.gov/ ), sponsored by the National Library of Medicine and designed for the consumer. Great articles from reliable sources like the Mayo Clinic, NIH, etc.

Allow me too to put in a plug for your local public or community college library. Libraries lease indexes that will give you the full text of articles published in reliable medical and consumer health publications. If you are seriously looking up health information on the Internet, please try that before Googling anything.

Leslie Walker: Yes, thanks for that reminder, Lincoln MedlinePlus is an excellent resource!

Libaries are, too. Many people don't know their local library typically buys access to many subscription Web sites of all kind and offers them free to patrons. I have done a bunch of free genealogy research in libraries that would have cost me mucho $$ at home.

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Oklahoma City, Okla.: How creditable is Heathgrades in evaluating hospitals and physicians quality and performance.

Leslie Walker: I don't have a lot of experience with Health Grades Inc. (www.healthgrades.com) but it is one of many companies that currently helps people evaluates hospitals and docs online.

Others include Subimo (www.subimo.com) and one from Medicare that launched tow months ago, Hospital Compare (www.hospitalcompare.hhs.gov).

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Alexandria, Va.: What is your opinion on .org sites in general? i.e. cancer, heart, diabetes, stroke, etc.

Leslie Walker: Many of the best specialty sites are run as .orgs because they are created by associations dedicated to particular diseases, such as the American Heart Association, which has a good site:

www.americanheart.org

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Leslie Walker: That is all we have time for today. Thanks to everyone who sent in questions. Sorry I couldn't get to them all.

Hope to see you again soon. Bye for now!

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Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.