Health 2.0

The Internet’s Downsides: Tell Us Your Stories

This is a request for help finding people who have had bad experiences with online health resources.

Let me first say that the internet is often a positive force in people’s lives.

My own organization’s research can paint a rather rosy picture: teens are mostly kind to each other online, technology users have more friends than those who stay offline, more people are online than ever before, etc.

But there is another side to the story.

Pew Internet has also documented the fact that, among other groups, people living with disability and those living with chronic health conditions are disproportionately offline. Some people have only dial-up or intermittent access, like at the library or a friend’s house, and therefore miss out on important conversations or information.

The internet can also transmit false or misleading information. A 2010 survey found that 3% of all U.S. adults said they or someone they know has been harmed by following medical advice or health information found online (1% minor, 1% moderate, and 1% serious harm). Thirty percent of adults reported being helped.

There are emotional pitfalls online, too. A 2006 Pew Internet survey found that 10% of people seeking health information online said they felt frightened by the serious or graphic nature of what they found online during their last search.

Amplifying that dark side, a November 2008 Microsoft study found that “Web search engines have the potential to escalate medical concerns.” Now, I have my quibbles with that study, but I think it points to an important truth: online health information can be scary. You can’t unsee some pictures. You can’t unread some blog posts. You can’t get back that night of sleep you lost worrying, searching, wondering what’s going to happen to you, your child, your partner, your parent.

Research — Pew Internet’s and others’ — suggest that, at times, people are right to worry, to ask the scary question, and to post frightening stories. But sometimes the pain resolves on its own, the fever subsides, or the injury heals perfectly.

I would love to hear from people who fit into the small groups listed above — those who don’t go online (or who have intermittent access), the 3% who feel online health research brought harm, the 10% who were frightened, perhaps unnecessarily. This is an aspect of online life that isn’t yet fully understood, so I’m hoping to learn from people who have lived through it. My promise is to then tell your story — with or without your name attached, your choice — as part of my ongoing mission to help people understand what’s really going on with the internet and health care.

If you’d like, you can post your story in the comments. If you’ve already written about this somewhere else, just post a link. Alternatively, you can email me privately: sfox at pewinternet.org. If you know someone who is offline, please let them know that I am happy to talk on the phone: 202 419 4511. Whatever mode works — I’m listening.

Susannah Fox is the associate director of the Pew Internet & American Life Project. She blogs at susannahfox.com

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Colleen JonesjohnSusannah FoxJohn Irvineanonymous Recent comment authors
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Colleen Jones
Guest

I’m glad to see that you + Pew are taking on this topic. We conducted an in-depth study this year of people’s perceptions of content credibility–both overall and for health. Why? Because so much research + decision-making happens online. And, the content ecosystem is changing. Any organization or individual can publish health content online.

I’m sharing a few links to articles and summaries based on our research. If you give me an email address, I’ll be happy to send a complimentary copy of the full report.

ACM Interactions: Will content credibility problems flatline health innovation?
http://interactions.acm.org/archive/view/september-october-2012/will-content-credibility-problems-flatline-health-innovation

Contents Magazine: (Re)consider the source
http://contentsmagazine.com/articles/reconsider-the-source/

About the Study
http://content-science.com/the-study

Susannah Fox
Guest

Thanks, Colleen!

My email is sfox at pewinternet dot org and I’d love to get a copy of that study.

john
Editor

And not to mention the healthcare implications of this little bombshell .. Is That Review a Fake? / NYT In a Race to Out-Rave, 5-Star Web Reviews Go for $5 By DAVE STREITFIELD As online retailers increasingly depend on reviews as a sales tool, an industry of fibbers and promoters has sprung up to buy and sell raves for a pittance. “For $5, I will submit two great reviews for your business,” offered one entrepreneur on the help-for-hire site Fiverr, one of a multitude of similar pitches. On another forum, Digital Point, a poster wrote, “I will pay for positive… Read more »

john
Editor

I get the value of the research Pew is doing here. But the numbers you’re reporting seem a little bit (maybe horribly) skewed. Only ten percent report being frightened? That suggests to me that you’re not talking to the right people or asking the wrong questions. (To your credit, you are now attempting to find the right people. So points for that.) Define frightened. Do you mean moderately or seriously freaked out? Do you mean vague feelings of discomfort? Do you mean panic attacks and obsessive web surfing? Only three percent report being harmed? Ouch. Sorry. Something is clearly seriously… Read more »

Susannah Fox
Guest

Thanks, John. I welcome the skeptical questions! Pew Internet’s role is often to put numbers on what people *think* is happening — sometimes it matches perception, sometimes it doesn’t. And we are always looking to improve. The question wording may provide a clue for the “frightening” data point — we focused on the LAST time someone did a health-related search online (not “have you ever felt…”). In that way we are able to get the respondent to focus on a specific moment and capture a portrait of a “typical” search. We do the same thing when we ask if the… Read more »

Susannah Fox
Guest

Also, if you want to dig in, here’s the full data set for the September 2010 survey:

http://www.pewinternet.org/Shared-Content/Data-Sets/2010/September-2010–Health.aspx

We are currently in the field with the 2012 survey. We didn’t repeat the helped/harmed question, mostly because we thought it’s outlived its usefulness as a measure. I thought it was still worth highlighting in this post, but it is riding off into the sunset soon.

john
Editor

I developed a possible cancer. I got the call by voicemail from my doctor on a Wednesday night but didn’t actually pick up the message until Friday night when it was too late to reach the doctor’s office. Between Friday night and Monday morning, I researched enough on the internet to terrify me beyond words. I’m not a lay person. I should know enough to put context to the volumes of information and I do. But there were too many unknowns and so many people’s horror stories and awful possible outcomes. I ended up taking an alternative therapy that I… Read more »

Susannah Fox
Guest

Sometimes I wish I could field a survey question along the lines of “Would you rather know, or not know?” But of course the answer would be, “It depends.” And even if you answer yes, you might take it back later, when you are terrified beyond words. I was so sorry to hear that part of your story.

Maybe we can explore your point about sorting through what is relevant or appropriate — what strategies do people employ? I’m sure other research has been done on this — if anyone knows of some, please share.

john
Editor

The faulty information issue is a huge problem with no clear answer. For many pharma companies and providers the temptation to use the Internet and increasing social media to spin products and services is proving irresistible. Sophisticated users know the warning signs. Novices? Not so much. Farmed content. Salesy language. A lack of contact information. Suspect endorsements. An obvious commercial pitch. Let’s put it this way. I run into this stuff each and every time I go online to research a health problem. Its cyberkudzu. Is the answer to look only at supposedly “credible” sources like Cleveland Clinic or Mayo?… Read more »

Susannah Fox
Guest

“Cyberkudzu” resonates with me. Early in our research at Pew Internet (like, 2001) we asked people how they judge the credibility of online health information. One answer: if the advice appears on more than one site, that increases its credibility. Of course that was just the beginning of the age of syndicated content — it’s everywhere now.