Patient stories on the web may not be real

“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.

Lisa Gualtieri is Adjunct Clinical Professor in the Health Communication Program at Tufts University School of Medicine and blogs at her self-titled site, Lisa Neal Gualtieri.

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