Patient Stories on Health Web Sites Can Not Always Be Trusted

Guest post from Lisa Gualtieri, PhD, ScM, Adjunct Clinical Professor in the Health Communication Program at Tufts University School of Medicine. Lisa teaches Online Consumer Health and Web Strategies for Health Communication. A social media user herself, Lisa (Twitter, LinkedIn) blogs on health and is Editor-in-Chief of eLearn Magazine, where she blogs on education.

“On the Internet, nobody knows you’re a dog” was the caption of the famous cartoon by Peter Steiner in the July 5, 1993 issue of The New Yorker. The same is true of patient stories on health Web sites: nobody knows who really wrote them. In the case of Lifestyle Lift, the company agreed to pay a $300,000 settlement last year to New York State because their patient stories were employee-generated.

Patient stories can provide information, support, reassurance, and practical advice, which is why 41% of e-patients read the commentaries and experiences of others online. The three primary types of patient stories are the unedited user-generated stories in online health communities and patient blogs; professionally edited or “as told to” support stories; and promotional stories.

User-generated stories in Weight Watchers’ Message Boards provide context to questions and responses and add a sense of reality and dimension to the person posting, making authors, and therefore the content, seem trustworthy. This is not isolated to weight loss sites but is true of cancer support sites like ACOR.org and countless other online health communities and patient blogs. Similarly, in the more carefully crafted and edited support stories, such as Livestrong.org’s Survivorship Stories and Weight Watchers’ Success Stories, the details in each story make the person the story is about seem trustworthy. Any inaccuracies in the user-generated or edited stories may not be intentional and do not necessarily detract from the helpful or supportive nature of the story.

Promotional stories are not always easily distinguishable from other types of stories on health Web sites. While Weight Watchers’ Success Stories focus on strategies, RediscoverYourGo uses stories to promote replacement surgery. The stories are about the debilitating pain and the process of finding a doctor, undergoing surgery, and engaging in an active post-recovery lifestyle. According to the developer, they are from “100% real patients.”

But not all stories are from 100% real patients. Lifestyle Lift’s employees fabricated testimonials; actual patients’ comments are now on their Web site, they claim. The Web site features before and after pictures, and, not surprisingly, the after pictures have better lighting and composition and the people are smiling, wearing flattering make up, have changed their hairstyles and clothing, and even put on jewelry. Well, no law against that.

A hotly debated solution to discerning the credibility and reliability of health Web site content is seals. HONCode and U.R.A.C. are the seals that are best known for health Web sites, but many sites don’t have them, most people don’t know to look for them, and they don’t have widespread recognition. While it was not a surprise that neither of those seals were on Lifestyle Lift, it was startling to find their own seal, “The Lifestyle Lift Code of Internet Conduct and Assurance”. It pledges that “comments and photographs are from actual clients” and that they are “proud to take a leadership role in establishing new standards of Internet conduct and communications”. Was this seal created in response to the settlement? It was larger and more prominently displayed than the HONCode and U.R.A.C. seals usually are.

No matter which side of the seal debate you are on, seals do not authenticate individual patient stories. Unless you know the author of a story, you never know for sure if it is true. As Trisha Torrey points out, patients want to believe stories because they are desperate for information. Ultimately, most stories are from real people sharing authentic experiences, and the best way to weed out the others is to use common sense, be skeptical, check with a trusted medical professional, and remember that there are Lifestyle Lifts that haven’t been caught.

Print

Posted in: general

 

 

Comments

62 Responses to “Patient Stories on Health Web Sites Can Not Always Be Trusted”

  1. There’s nothing I hate more than this, maybe the ones that splatter their site with “As seen on…” I mean, who regulates all this stuff?

  2. lose weight says:

    Thanks for pointing this out. The weight loss industry can be greedy and deceiving, proper education about this is so important. Regards, Chrysten

  3. Paul says:

    I was reading where people also put up fake messages and fake cancer websites in hope of gathering donations…. most are just trolls looking for attention.

    But some are down right con jobs.

    Make sure you do your research before sending any money.

    Thanks for the article. great tips.
    Paul

  4. Dan says:

    This is a great post thanks for pointing this out! Educating people on how to lose weight is really important and this sort of stuff only makes the job harder!

    • Dude, you might as well stop sending in spammy comments with links to your weight loss site – we don’t play that game here. (I left one but removed your spam link.) We’re here for community, not advertising.

  5. Is it legal for St. John’s Mercy Hospital in St. Louis to discriminate against the patient? We had a non-covered item while in the hospital-Belladonna, for which we were charged $150 each for 2 pills.{Walmart at the time sold 60 of them for $4.00.} I also saw a similar price in a vitamin catalog. First of all, I find the price exorbitant! Also, when the insurance covers an item, they only pay 12 or 13percent of the bill and the hospital accepts that. But the patient has to pay the entire amount of the unpaid bill. Is that not discrimination? I would be interested to hear what others have to say.

  6. […] Another guest post from Lisa Gualtieri, PhD, ScM, following her much-commented earlier post. […]

Leave a Reply