Decoding “The Social Life of Health Information”

The Pew Internet/California HealthCare Foundation report, The Social Life of Health Information, is packed with new findings from a survey of 2,253 adults, including 502 cell-phone interviews, conducted in either English or Spanish.

We spent a bundle of money on making this a random sample of the U.S. population, but guess who got a call on his cell phone?  None other than e-patient Dave!  He had never talked with me about the survey questions or reviewed a draft, so I decided to keep his interview in the mix, but he surprised the heck out of the interviewer when he finished the sponsor identification for her at the end.

It’s a long report, so here is a cheat sheet:

Comfort food

This survey once again establishes that 83% of internet users (61% of adults) in the U.S. look online for health information (I call these people “e-patients”).  That tracks with every other survey conducted in the last few years – ours and others – so it’s just comfort food for data geeks.

Is Health 2.0 hip or hype?

Hip. There is significant uptake for Health 2.0-type activities online: 59% of e-patients have consulted blog comments, hospital reviews, doctor reviews, and podcasts. 20% of e-patients have posted comments, reviews, photos, audio, video or tags related to health care. People are tailoring their online information-gathering, targeting “just-in-time someone-like-me” health info and doing some sharing, too, especially young people (18-49 years old) and those with mobile internet access.

Anything in here for Information Therapy fans?

The primary relationships in health care are institutions which, in the words of John Seely Brown and Paul Duguid “will not budge” (hat tip to their book, The Social Life of Information).

When asked, “Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources…”

• 86% of all adults ask a health professional, such as a doctor.

• 68% of all adults ask a friend or family member.

• 57% of all adults use the internet.

• 54% use books or other printed reference material.

• 33% contact their insurance provider.

• 5% use another source not mentioned in the list.

You read that right:  The internet is tied in third place with books!  Vive l’impremerie!

The good news: They like you! They really, really like you!

60% of e-patients (42% of all adults) say they or someone they know has been helped by following medical advice or health information found on the internet. That’s up from 2006 when 31% of e-patients (25% of all adults) said that. Just 3% of e-patients say they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006.

The bad news: We don’t have full participation

Only 25% of adults with less than a high school education go online for health information, compared with 50% of high school grads, and 85% of college grads.  27% of adults age 65+ are e-patients, compared with 59% of adults age 50-64, and about seven in ten adults age 18-49. 44% of Latino adults go online for health information, compared with 51% of African Americans and 65% of whites.

Further, two-thirds of e-patients ages 18-49 have done at least one of the Health 2.0-type activities listed, compared with one-half of e-patients age 50 and older. There are no significant differences when it comes to education – those with less education who engage in any health activity are just as likely as other e-patient to post and read comments, reviews, etc.  Same goes for race and ethnicity.

Shout-outs to special interests

Mobile health fans: You’re the big winner here. We did statistical regressions and indeed mobile access is a significant, independent factor in health social media participation.

Facebook/MySpace/Twitter fans: You’re the big loser in this survey. There is very little evidence that social networks have become e-patient hang-outs. Health orgs may want to spend their resources elsewhere for now: just 6% of e-patients who use social network sites started or joined a health-related group.

Health publishers: The market for comments, ratings, and tags is ripening. If you’re not opening up to user-generated input, start thinking about it. Your audience is waiting.

Health professionals: Judgment Day is approaching and only a tiny slice of your patients are on the review committee. 35% of adults have looked online for information about doctors or other health professionals and, of those, one-third have consulted online rankings or reviews and only 7% of that group has posted a review!

Hospital administrators: 28% of adults go online in search of information about hospitals or medical facilities and, of those, 45% have consulted online rankings or reviews and only 9% of that group has posted a review.

VCs: There is steady and increasing interest in health: flip to the back to see which topics are hot, like fitness info which saw an an 88% growth since ‘02, a more rapid increase than any other health topic covered in the survey. But know this: few people do this stuff every day or even every week.

Pharma: 33% of adults have looked online for information about prescription or OTC drugs. What’s interesting is that people who look up drug info are not likely to also look at alternative or experimental treatments – your customers are pretty focused.

E-patients and caregivers: Contribute! People are listening.

Susannah Fox is the associate director of the Pew Internet & American Life Project. She blogs regularly at e-patients.net.

9 replies »

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  2. John,
    I agree that opening a Twitter account or putting up a Facebook page are cheap, but investing the time & energy to meaningfully maintain them can be expensive unless an organization is blessed with a “natural” who can lead the social media engagement.
    Just for fun, let’s start a list of who is a “natural” in the health care world when it comes to engagement. I’ll start with an easy pick:
    Paul Levy of Beth Israel http://runningahospital.blogspot.com/

  3. Wendell,
    Thanks for the methodology question, esp. since the Pew Research Center spends quite a bit of time and energy (not to mention money) making sure we capture an accurate picture of the current population and the California HealthCare Foundation boosted our budget, allowing us to include Spanish-speaking interviewers for the first time.
    To your question: This survey included interviews of 2,253 individuals, age 18+, of whom 1,751 were on landlines and 502 were on cell phones. This is a pretty standard target for national telephone surveys whether the topic is social media & health or political opinions. For more specifics on how the data was collected, please see the Methodology section of the report: http://is.gd/123NE
    The cell phone question is essential for people like you & me & anyone else reading THCB since the CDC has documented that the health habits & status of the cell-only population are quite different from the landline population (see: http://www.aapor.org/docellphonesaffectsurveyresearch).
    In addition, my colleagues at the Pew Research Center are watching the cell phone issue like hawks:
    Cell Phones and the 2008 Vote: An Update
    How Serious Is Polling’s Cell-Only Problem? (2007)
    Finally, if anyone’s read this far and haven’t yet gotten enough of this topic, please check out Mark Blumenthal’s excellent blog: http://www.pollster.com/blogs/ He is also on Twitter: http://twitter.com/MysteryPollster

  4. Never before in the history of mankind has it been easier to reach out to people all over the world. Online communitieslike MySpace, make meeting new friends with similar interests incredibly easy. MySpace is a great place to share tips, ideas and stories about the things you find most interesting. If you have a question about your hobby, you can easily find the answer through your network of members with similar interests.

  5. Fascinating survey. None of the statistics in the report that I saw are surprising, but nonetheless always interesting to see whether one’s hypothesis about reality is in fact corroborated by reality.
    Regarding the sample size, unclear to me whether those spoken to – 21% and 25% (for cellular sample) – are percentages of the sample size of 2253 or 2253 is the net number contacted. I assume the former which seems to me to be a very small number.
    The “social networking” phenomenon as it relates to exchange of information for some health or healthcare related need seems to me to be more hype than substance.
    The areas where the Internet and its features can add significant value in my view are fairly simple. First and foremost is communication via electronic means with a medical services provider, a close second is the use of electronic means to schedule an appointment or access a full medical record, third is to find information regarding the cost/value of medical service providers (facility or person), fourth is research on a particular malady.

  6. wow. surprised this one didn’t get more of a reaction —
    “Facebook/MySpace/Twitter fans: You’re the big loser in this survey. There is very little evidence that social networks have become e-patient hang-outs. Health orgs may want to spend their resources elsewhere for now: just 6% of e-patients who use social network sites started or joined a health-related group.”
    this is really interesting. on the other hand, i’m not sure it’s very surprising.
    then again, when we talk about conserving resources, it seems to me that the a large part of the appeal of these technologies – after their ubersexiness – is that they’re dirt cheap. so not sure if using them is a major risk – at least economically.

  7. Jane, you are absolutely right! Your own study documented the “long tail” of online health resources and yes, patient communities are thriving on all sorts of platforms.
    When someone recently asked me to define “social media” I said I personally would include email, bulletin boards, and listservs — all early homes for participation and information exchange. But for the purposes of this study, and esp. the Health 2.0/THCB readership, I wanted to inject some reality into the conversation about just how widespread usage of FB/MySpace/Twitter are (or are not) when it comes to health. We may be using it (loving it, even) but we are not typical internet users.

  8. Such a rich report! While Facebook/MySpace/Twitter may be ‘losers’ in the research, I’m thinking about the condition-specific specialized sites – clearly, PatientsLikeMe, DiabetesMine, TuDiabetes, Organized Wisdom, and their peers, are highly valued by their communities which have been sustaining for some time. We know they’re beloved to their members, which while not millions in terms of “N,” seem sufficiently large to survive and thrive on their own terms. Media and social network naysayers may interpret the Facebook/MySpace/Twitter point as a rejection of all social networks in health. That would be a mistake. They’re facilitating participatory health. JSK