Health Talk: Conflicts of Interest On-Line
Hosted by Craig Stoltz
Washington Post Health Editor
Tuesday, May 16, 2 p.m. EDT
The Internet revolution has created an explosion of sites focusing on anything health-related, from general topics to obscure conditions. Increasing numbers of people are looking to the Internet not only for health information, but for new treatment options and support.
In this week's Health section, Craig Stoltz discusses the benefits and pitfalls of the Internet as a health information tool. He also provides a familiar caveat: users should avoid believing everything they read.
Please read the transcript below.
Craig Stoltz: Well good afternoon, everyone, and welcome to another version of Health Talk.
Today we're talking about using the World Wide Web to get health information. Today's story in the Health section (written by yours truly) reviewed eight major commerical sites that are aiming to provide you and your loved ones with health information; we also provided a short list of less commercial sites that we here in the Health section feel confident enough about to recommend--some government, university and non-profit (and a couple for-profit) sites that do a good job at brokering health information honestly.
Today we'd like to hear from you about sites you use, recommend, like, dislike or have stories or insights about. Our list of favorites was purposely short, and we plan next week to publish a list of readers' suggestions for sites they use for information on specific conditions or for special purposes.
If you have questions about privacy, on-line transactions and other issues about using Web sites for health, we'll take those too.
All that said, let's get to it.
Montgomery Village, MD:
I participate in an online support group for patients who have had weight loss surgery. I find that, while there is a great deal of mis-information, there are many people who are learning, questioning and becoming better consumers of, and advocates for, their health. Do you think that these vehicles for consumer information make patients better able to make decisions on their own behalf and is the medical community ready to deal with these educated consumers?
Craig Stoltz: I think the concept of online support is much better than the current execution. While researching the story that appeared today we checked out most sites' discussions on various topics, looking for quality and quantity of responses posted. Fact is, nearly every one of them is punctuated by commercial messages, or, frankly, by people who just seem to be short-tempered and mean in that way the Internet somehow seems to encourage.
I have heard from many folks that a specific group has proven valuable to them; I'm also aware that those that are moderated by lay or professional monitors are usually higher quality.
As for the medical community being ready for informed consumers, the question opens wider than this story. I do think consumers are more skeptical and demanding--and more tempted to dig around on their own--since the advent of managed care and the breakdown of long-term relationships with doctors. Web info is just part of what a more self-educated consumer brings to a doctor. I think doctors are going to have to come up with a strategy beyond simple dismissal--or, for that matter, acquiescence--in dealing with this more assertive, half-or-more-informed patient.
Carson City. NV:
I like to use PubMed for research on the web and I find it very reliable. A health page I like is called ff2k.com. They have several products and all have medical journal research about them, especially the one called "Miracle-Boost" that has research from the University of Buffalo in reversing breast and prostate cancer. They seem to have hundreds of studies in South Africa on this particular product that 'modulates' the immune system. It has even reversed AIDS from the research that was published in the 'Immune System Cure'. Have you ever heard of this product? The main ingredient is Hypoxis or Wild African Potato and Oilseed sprouts.
They even have a representative in Washington, DC her web site is: www.ff2k.com/team/2kcbcr2k
Craig Stoltz: Hi Carson City. I'm posting this message with some trepidation, as the site you mention--which I have not visited, to be clear--is described in a way that makes me think it's potentially dangerous. Cures or treatments for such well-studied diseases that remain obscure to the general public--unless they happen onto *this* Web site--have to be eyed with considerable suspicion. Will I eat these words someday, when Mayo Clinic annouces that "Miracle Boost" has indeed proven to be an effective treatment for cancer? I doubt it.
My advice: If you find information on a site for a condition that looks too good to be true, but feel tempted to learn more anyway, ask about it at one of the major sites whose experts takes questions--any of the eight we review today, or sites you find linked to a reputable source, like www.nci.com (the national Cancer Instutite). Or ask your doctor.
The Health section, like the health establishment, has opened considerably to "alternative" or "complementary" treatments in recent years. But fooling with stuff upon which no good science exists is just plain dangerous and foolish.
Craig: Discuss if you will the various messages on different diseases that are put out on the internet and how people should often be wary of whatever they read. For example, I often look up information on multiple sclerosis, a disease from which I suffer. I have been told my health professionals to often be skeptical of some of the "cures" or "treatments" that one sees because they can often give people a false sense of security.
Craig Stoltz: Bethesda, you refer to a rampant problem that our earlier questioner brought up: In an unmediated medium like the Internet, there's nothing standing between people communicating directly. But what they communicate can be driven and swayed by commercial, political, ideological and other undisclosed interests.
Unfortunately, people who are struggling with chronic diseases for which medical treatments are few or nonexistent are excellent targets for unethical--or just badly misinformed--entrepreneurs.
Always take "cures" and "treatments" to the most reputable sources available to you--on the Web or otherwise--for a second opinion before you spend a nickle or subject your body to something you know little about.
Nice story this morning! Can you recommend any sites that explain what advances in basic science mean for the future of medicine? You mentioned some good ones for cancer, heart disease, and other specific conditions, but how about more generally? I know there's some good material at the NIH site (www.nih.gov) and the Howard Hughes Medical Institute (www.hhmi.org). Any others?
Craig Stoltz: Thanks, Rockville. Truth told, I don't follow leading-edge health that closely, as we in the Health section try to stick to issues and matters that are of some current consequence to readers. I do enjoy following the health newsfeed on HealthSCOUT, which does a credible job of shoveling forward the stuff that emerges from the medical-industrial complex. Beyond that, and aside from the ones you mention, I don't have any to offer.
Any viewers/users out there know of sources of good leading-edge medical stuff? I like Science.com--the magazine's site--but the site requires you to subscribe to access (most) full articles.
Craig, what role does the government currently play in regulating health information sites? Do you think that regulation by the government will become tighter in the coming years? If so, in what ways? How will this effect those who control the sites? What about consumers?
Craig Stoltz: Happily, government plays no role at this point in regulating health sites--aside from the FTC, which within its mandate to police false and deceptive advertising and marketing statements can and has taken action against certain really bad players among online Health Web sites.
The industry is trying to self-regulate, but it's not very useful. There is a program called HON, which most of the sites we reviewed belong to, and which requires those who display the HON badge online to abide by certain privacy, disclosure and advertising practices. In a recent survey (not ours), nearly every company was found to have numerous violations of the HON code (which many of them denied).
In our survey, we found plenty of cases where sponsored links were not disclosed as such, where ads were not marked as ads until you clicked on them, and where the lines between "editorial" and "advertising" were seriously blurred.
The folks who already agreed to HON recently got together to agree to something they are calling hi-ethics--and allegedly higher standard of conduct regarding use of patient information, disclosure of commerical relationships and so on. My question: If they are not abiding by HON--and deny they are failing to abide by it!--why bother with this higher standard? What's going on here?
Before you set out to write this article, what, if any, preconceived notions did you have? How were your ideas and opinions substantiated or negated? Were you surprised at all with your findings?
Craig Stoltz: In truth, I found myself impressed with the general ambition and breadth of the major sites, more than I anticipated. But when we investigated who owned the sites, I became quite concerned. What analysts told us was that nobody has figured out how to make money publishing health information the Web--the model where publishers create information, and the cost is paid for by advertising--just doesn't work.
So everyone in the racket is trying to figure out how to survive in the business. And it's created some odd bedfellows and suspicious alliances. Drkoop.com has tried the hardest to court advertising, and I think has too often blurred the line between content and commerce. WebMD/Onhealth have been absorbed into a giant conglomerate that intends to make its money by automating the entire health care delivery system via the Web--whether they will be able to fund a solid health-information operation (right now the company is bleeding cash in a serious way) remains to be seen. InteliHealth, while it is in partnership with Harvard, is fully owned by Aetna, which has not been an unblemished player, to put it kindly, in the managed-care wars.
It remains to be seen whether an independent publisher of patient-centered medical information can be a success online.
What does HON stand for?
Craig Stoltz: Sorry for the jargon. It stands for Health on the Net Foundation, a Switzerland-based non-profit group dedicated to ensuring a high degree of integrity of health-related Web sites. You can see its code at http://www.hon.ch/HONcode/Conduct.html.
As I said, my complaint isn't with the code, it's that its signatories--and those who pay to display the HON sticker on their site--sometimes don't abide by the rules.
You covered a lot of ground in terms of taking a good, hard look at the more popular health information sites. With the recent news that dr.koop is floundering, what is your opinion regarding the future of health web sites? Will they continue to pop up at a fast rate or will some of them die off? What services/information would a health site ideally offer to consumers?
Craig Stoltz: Everybody I asked this question to giggled. "With 20,000 health sites out there already, who is going to fund a new one at this point?" one said.
I do think the sites will consolidate--as we point out, drkoop is reported (not by us, I should say) to be down to one or two months of cash, and it's widely expected they will be bought, merged or folded soon.
If the field does indeed consolidate--meaning that instead of about 20 major sites trying to get visitors, we have 4 or 5--there might be enough ad and sponsorship dollars around to support them. The question is, will they remain independent and patient-focussed? The general drift of the industry now does not look good.
Do any health web sites have links to on-line pharmacies? That would be convenient.
Craig Stoltz: Yes, and that's both good and bad. Most health Web sites are in the process of cementing deals with online pharmacies--the idea is that visitors to the information site will be escorted directly to the RX, should they find themselves moved to make a purchase while online. The site would get a commission or fee for sending the customer their way.
The question is, will this commerical relationship distort the information on the site? In our survey, we found that some sites have excellent, highly rigorous information on nutritional supplements, for example. Others had simpler information that did not hold supplements to the same high standard that they do medicines. I couldn't find an example where I thought a site was "going easy" on supplements on its content area in order to boost the chances of commerce. But the temptation will clearly present itself. If vitamins and supplements are a major profit center, is a site more or less likely to devote expensive editorial resources to exploring the science behind their health claims?
By the way, if you're interested in online pharmacy price, go to one of the sites we like, www.ditonline.com/pricetracker.htm. It has a chart that shows current prices for three big online pharmacies--and tells you who's cheapest.
Craig, I'm traveling to Africa on business in a few months. Haven't traveled outside the u.S. in about 10 years, and was wonndering if you know of any websites that could tell me what kind of innoculations I should get. Thanks in advance.
Craig Stoltz: http://www.cdc.gov/travel/
The CDC keeps a pretty good site that tells you what shots you need and so on.
Anybody have another favorite travel-health site to recommend?
I noticed you didn't mention the Mayo Clinic Web site. Any intelligence on it?
Craig Stoltz: Actually, we did. The Mayo Health Oasis (www.mayohealth.com) we cited as an example of a well-done unversity-research hospital site that, alas, makes a bit too much of its own doctors' accomplishments. They do a fine job of providing useful, updated info on conditions, as good as most of the commerical sites we review. I just can't get over the feeling that the unversity suits couldn't resist the temptation to use the site to hammer home what great work is being done by Mayo docs. It's sort of bothersome to come across a decent resource on coping with Alzheimer's, and get to the inevitable quote by a Mayo doc. Smells a little funny, is all.
Montgomery Village, MD:
A previous poster asked about sites for science based information on health. I subscribe (free) to medscape.com and receive a weekly update on the specialty in which I have indicated interest. While the articles are generally clinically relevant and less basic science, there is always an article or two of basic science. Note that the articles are medscapes distillation of the actual scientific/clinical journal but it does point one in the right direction.
Craig Stoltz: Yes, good tip, MV. I should point out that Medscape is the site behind CBSHealthwatch.com, which we did review. And yes, because the Medscape operation is aimed at providing information for doctors, it does have deeper, more researchy and in-the-lab coverage than Healthwatch and many other consumer sites.
Hi Craig! I noticed that you left Ivillage.com out of your review. It's a site I use quite a bit, and I'm wondering what your impression of it is.
Craig Stoltz: We decided to look at thriveonline rather than Ivillage--both are good health/lifestyle sites aimed at women. We could easily have highlit iVillage instead. I'm told that, like thrive, their message groups are better than most (online observers report that women tend to discuss better and more fully online than men do. No surprise, I suppose.)
Howard County, Md.:
Hi Craig. Read your story online this afternoon and really enjoyed it. I was wondering what you thought about live surgeries on the Net--I think the fat chick from Wilson Phillips had her stomach stapled that way. How instructive to people do you think that is?
Craig Stoltz: Wilson Phillips' gastric bypass operation online is one of those weird landmarks in Web history--let's do it because. . .well, because we can do it! More sensation than instruction. For less gross, more authoritative guts online, check out adam.com--lots of visible man/visible woman stuff, but less prurient.
Sounds like your previous chatter has been reading the same site that has SA President Mbeki bucking the entire medical est. on AIDS. South Africa doctors are very bitter about his decision to not treat pregnant women with AZT since it is the best weapon they have to date against transmission to the fetus. The problem w/ bad info is it displaces good info.
Craig Stoltz: Here here.
Many hospitals, big and small, are endeavoring to establish their own health information sites. While some are solely commited to giving information about their services, others also offer consumers general health information. How do these sites compare to for-profit health sites? What significance do they have for consumers?
Craig Stoltz: The question with a hospital-published site is the same as with other sites--can you trust them to provide information that's in your best interest? They may tout their cardiac unit, while in fact a neighboring hospital may, by all objective standards, provide better service. They may encourage you to get tests that make them more money--again, not necessarily the same tests that are in your best interest.
And I suppose that's a fitting note to end the day's discussion on: What users really want is a health site that has their best interests--as patients, consumers, humans--at heart. I'm not sure that, in today's intense health care business climate, hospitals can afford to operate that way.
Thanks to everyone who joined us for today's discussion. Be sure to read "Behind the Screens on Health Web Sites".
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