Personal Health 2.0

Everybody seeks health and medical information online now, that's old news. According to Pew Research adults not only seek out details about health conditions but other people living with similar experiences and illnesses. So we need to talk about the social life of health information.  As my own personal social life sputters and burns, it's reassuring my health might soon have one. That's right, health information now has a social milieu and it's Twitter, Facebook and Google+:

Our latest national survey on the topic finds that seven-in-ten (72%) adult internet users say they have searched online for information about a range of health issues, the most popular being specific diseases and treatments. One-in-four (26%) adult internet users say they have read or watched someone else’s health experience about health or medical issues in the past 12 months. And 16% of adult internet users in the U.S. have gone online in the past 12 months to find others who share the same health concerns. Pew Research Center

If that sounds dry and boring, here's some social health up close and personal. Warning, it's not always if ever pleasant. The NPR host, Scott Simon live tweeted his mom's final breaths from the hospital. More of you might be familiar with Lisa Adams, the mother blogging through her late stage breast cancer who became the target of negative media attention earlier this year when she got bashed by two well-known journalists married to each other. Sharing has its costs, it doesn't always bring compassion or applause. Adams became the subject of articles written individually by Bill Keller over at the New York Times and Emily Keller at the Guardian. Basically Bill jumped in to defend his wife and ultimately editors at the Guardian removed her article because it made them queasy (read more about the saga at Salon). Ms. Adams' is an unusual case for sure but there are countless blogs, forums and chat rooms devoted to less extreme illnesses and disorders for example, autism, infertility and allergies. A person could spend all day and night perusing personal stories.

However beneficial the effects of sharing and reading personal health experiences online, there's another darker issue besides personal attacks dogging the phenomenon and that's the accuracy of the advice and evidence. I probably don't need to remind anyone here that health news in general, even the supposed better sites and better studies, suffer from botched reporting. A 2012 study found 51% of news articles  exaggerate or "spin" the results of medical trials to make them appear more important and dramatic. If health journalists can't get it right, if major media can't get it right, then I'm not sure we can expect parents to do any better - to say nothing of observers that chime in with their own insights or biases. Not that a mother struggling with an illness can't become knowledgeable and share highly accurate information but the odds are not good. There are simply too many examples of flawed health claims (see Jenny McCarthy). Sure readers might not seek a fellow mother for medical knowledge per se, but it comes with the territory. It leaks out. Anyhow, this is just one more thing to wonder about when seeking comfort, compassion or understanding on the Internet.


Andrea said...

First off, if your social life sputters and burns, you'll always have your Internet friends! Secondly, are you sure it's just 51%? I think THAT might be biased and skewed... Anyway, all the more reason for you to keep blogging. And speaking of JMC, did you ever see her MIL 's story? Personal narratives may be dramatized indeed!

Polly Palumbo, Ph.D. said...

I know, 51% seems far too low, I can't remember exaclty how they defined spin but remember thinking it was a high threshold. Will have to go back and check. Now that I've figured out MIL, wow, wish the MIL had spoken up sooner!

And now JMC says she was never anti-vaccine.