September 5, 2012

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.

Pew Internet’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 on my personal blog. 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.