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.
Well done, Lisa. In my jobs in industry (not healthcare) I’ve been involved in plenty of user “case studies,” you’ve correctly nailed the authenticity issues in the first two types.
I personally have zero tolerance for any company that would fabricate stories about health issues. I think they should be ratted out and listed on some Hall of Hell website. :-)
People, this is not like selling shoddy socks on late night TV – people’s health and lives are at stake! Not a playground!
Good contribution, Lisa. Thanks.
Great post, Lisa. I’m wondering if you have looked at all into the vast world of online birth stories. I have seen a huge and growing number of women posting and reading birth stories, and I’m fascinated by what the experience of pregnancy must be like in this day and age with a literally limitless well of raw stories to read. (My younger child is only 3.5 and even in that brief time, the number of birth stories online and the ease of finding them have increased remarkably).
I doubt, as is the case with some kinds of patient stories, that there is much fabrication for financial reasons. I have seen birth stories of questionable authenticity that seem to me to be someone’s fantasy or joke (not sure what the motivation there is).
Of interest to the e-patient community, I am aware of one published qualitative study of women’s involvement in decision making for which the “data” were birth stories posted online. (Women were involved in decision making only 57% of the time and midwifery care correlated with higher likelihood of women’s involvement.) Do you know of similar studies using that kind of design to look at patient experiences in other areas of healthcare?
Could you please translate your site into Italian as I’m not so comfortable reading it in English? I’m getting tired of using Google Translate all the time, there is a little WP plugin called like global translator which will render all your pages automatically- this will make reading articleson your awesome blog even more comfortable. Cheers mate, Yulanda Chesher!
Thank you, Lisa, for an important post. I recall hearing someone—perhaps Jamie Heywood—say that members of online communities do a reasonably good job of detecting and exposing fraud when it shows up within the community. Your post is a good reminder that we all need to be aware and not assume that others will take responsibility.
I wrote an article with Bob Abelson years ago in which we said that the human mind can remember is stories. We are set up to hear them and we learn from them. But, this idea was poisoned in recent times by movies and TV. They tell stories, sometimes about historical incidents, that are simply not true. The worst of these are the “doctor’s testimonials” that appeared constantly on TV that were from “doctors” who only play doctors on TV. We are used to this but that does not mean that our minds don’t react to it as if it were real. Purveyors of information know this and they will exploit it for their own purposes. It is sad that companies are doing this and there is an answer for what to do about it . At some point the internet must be at edited for truth in some way. If we don’t do that we will have real problems. We have them already.
An excellent post. These issues occur on traditional consumer sites as well… your advice about being skeptical is good.
What we need is “sensitivity training” that would allow patients to look for the telltale indicators that a patient story is bogus. These are things like tone (too shrill), mistakes in facts (if they haven’t actually had the therapy), or multiple postings that seem to have the same writing style.
I wonder, though, if people are very good at detecting this. It’s like lying, we will *think* we’re good at it, but with no way to verify it’s impossible to tell.
I am a breast cancer survivor myself; I used CaringBridge pretty regularly to update friends and famiily members on my year long battle. Of course I fled to the Internet to get information during the early stages of diagnosis, ran back again as each chemo, surgery, and radiation side effect hit, and sought solace in the middle of the night at each unexpected challenge to my sense of well-being and self-esteem (you can have the “new normal,” thank you very much!) abounded.
Some of my factual info-seeking was on ‘credible’ sites like the Mayo Clinic or other reputable, known sources. I am Web-savvy enough to know that “you can’t trust everything on that there Inter-Web” and was always meticulous about my sources for anything purely medical.
Lisa, your report totally made me gasp outloud. The thought that in my more vulnerable moments, when I thought I didn’t need to be vigilant, I might have been reading less than genuine stories makes me feel a little sick inside. The whole appeal of the social networking/online community cameraderie centers around something I would have described yesterday as “trust” — should i instead view it as “gullibility” instead? It honestly would never have occurred to me that anyone would ever masquerade, albeit perhaps motivated by good intentions? Or more business success? Now I’m a little more cynical — and better informed. Thank you, Lisa, it was really elucidating.
This is a provocative discussion. Even if we could demand strong authentication of every individual, we’d still be vulnerable to those who choose to lie. No different really than the face-to-face world, though maybe it is slightly easier online to fool people. It confirms that the best policy in general is ‘trust but verify’.
Joe,
fully in agreement with the “trust but verify” motto. It applies to anything published, including what appears in peer-reviewed publications.
The post-publication review services, such as F1000 (Faculty of 1000), may be the best current tools we have to find rapidly trustworthy content of high value.
With patient reported stories you always have to keep an eye open for anything unusual in the stories told. It helps a lot having long term managers of online communities because they develop unique expertise and are often able to recognize trolls, troublemakers and other disturbing elements to the community. In 15 years we have knowledge of a a single massive cybermunchausen syndrome case in the ACOR system. But that single case was so traumatic to the 2 active group managers that they simply disappeared and have never communicated with us since.
It’s a tough world out there. I know of no reason why the Internet would be any less dangerous than the physical world. It provides many opportunities to hide the real identity of those who derive personal benefit from manipulating others. Educating all Internet users, including our children, early on about the inherent dangers of this vast public network where anyone can hide their real identity should be mandatory. I believe it is as important as learning the old classics or math equations, since almost all work in the future will require internet mediated knowledge acquisition
Very interesting topic. Do you think there will ever be a clearinghouse or way to authenticate patient stories?
I’ve been a long time member of ACOR LT-Survivors group – it’s been a fantastic resource for me. I tend to rely on groups like that for patient connections than a “company” site. I’d be interested in seeing this topic covered in more detail. Thank you.
Good morning, I don’t agree with everything in this write-up, but you do make some very good points. I’m very interested in this matter and I myself do alot of research as well. Either way it was a well thoughtout and nice read so I figured I would leave you a comment.
From the perspective of a search engine marketer and patient navigator, I find it interesting that search engines to not consider these HONCode and U.R.A.C. seals. It would be interesting to see the major search engines work something out to give sites with these verifications a boost in authority. About 70% of patients that are online searching for health information are likely to use search engines as a first point of entry to find the information that they need.
Wouldn’t it be great if search engines gave additional authority and/or visibility to those sites that have been actually verified? Wouldn’t that be a big step is saying that patient care and empowerment with accurate medical information is important?
As a search engine marketer myself, until recently, what an interesting idea!
There will be arguments about which seals deserve Google Juice, but since the secret sauce is secret, all they’d need to do is try it and see what works.
A crucial read today, The point is are we really utilizing health related sites
like http://tinyurl.com/yz6deleor, are we just blaming that health cannot be trusted in online, its left to how we take it, I personally believe its how accurate the facts we give in helps a lotThis is indeed an issue. Having just started a blog myself, I find it hard to find the right balance between anonymity and credibility. It is important for people to understand how to assess the information on the websites they read.
As with anything which is posted on a website, it can be very hard to actually prove the statement is legit.
That is sad but true, I have friend who belives in kind of diet supplement from China and two months ago he died – liver problem.
Therefore we should be very carefull when we read articles about “excellent medicines from china”. I trust only this what can I puchase in chemist.
Tod
I validate health stories by cross checking them with other similar stories and references to reputable authors.
The post from “Micheal Stmary” is exactly what this article is all about.
Thanks for the example, spammer.
Brad,
Fascinating example of a good community!
2 minutes after he posted his comment, I got notified of it, and clicked the “Spam it” link in my admin email.
And before I even got online to do that, the community (you) stomped on him anyway, and your “thanks, spammer” email arrived in my box. :–)
Oops, my time zones slipped a cog: I’m in Amsterdam so I didn’t realize I was six hours late. Anyway, point still stands – except in this case the community beat the cops by a mile.
This is quite a scary issue. Despite being a web addict, I have learned to take a lot of what I read with a pinch of salt. Particularly when it comes to researching health issues. My experience has been that generally people prefer to share negative slants, which often leads you to worry more about “worst case scenarios”. Your post raises something I hadn’t considered (perhaps naively) — that positive testamonials may not be authentic. Of course, my other rule of thumb — to only reference reputable sites (backed up by associations/journalist recommendations) — is quite a good protective buffer.
This is an eye-awakening post. In the cyber technology today, anything is possible. And people can just put up stories and make other people believe that it’s true. We should be more skeptical and ask for more medical advices, not just rely on false testimonies.
If the major search engines worked something out to give vertifications a boost in authority, patients searching for information would be safe turning to search engines as a first response.
Sites that have been verified should get some sort of search engine ranking boost because it makes sense that sites need a way to increase credibility if credible.
Plus inaccurate medical data is a major problem, any doctor will tell you that. Improving the accuracy of the data will improve this problem as well.
Took me time to learn all the feedback, however I actually loved the article. It proved to be Very useful to me and I am certain to all of the commenters right here! It’s always nice when you can’t only learn, but also entertained! I’m sure you had fun scripting this article.