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, which was one of Tom Ferguson’s must-reads).

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.


Posted in: demographics | trends & principles





24 Responses to “The Social Life of Health Information”

  1. […] Article Susannah Fox,, 10 June 2009 SHARETHIS.addEntry({ title: “The Social Life of Health Information”, url: “” }); […]

  2. Wow! My head is spinning from all this great info. Ms. Fox, you and the team at PEW have done an amazing job (once again).

    The thing I found most interesting was the Facebook / MySpace / Twitter stat. Does this mean I can no longer call Twitter-time work-time? I’ll have to noodle that one, but in the mean time I know study will be quoted again and again.

  3. Susannah Fox says:

    Josh Seidman reminded me that methodology geeks can find something to chew on in our report, too: Note we were able, for the first time, to include cell phone sample AND Spanish-speaking interviewers in a Pew Internet Project health survey, thanks to our partnership with the California HealthCare Foundation.

    Josh’s post is definitely worth a read, not least b/c he calls the report “the latest version of the e-health bible” (thanks!!):

  4. Fard Johnmar says:


    Thanks for putting out yet another invaluable report. Also, thanks for inviting me to provide a small bit of help during the planning phase of the study. I appreciate being listed in the acknowledgments section. Now, that I’ve been mentioned in a Pew report I can say I’ve truly made it. :).

    Wonderful, wonderful work.

  5. David Harlow says:

    RT @SusannahFox The Social Life of Health Information, full rpt: (cheat sheet on #hcsm

  6. Kevin Greene says:

    Tons of great information here! It’s great to see how much the internet has been reaching out and affecting our lives for the better (except for those 3% who find misinformation (any idea how that compares to people who run into complications from non-internet sources?))

    When I saw that the “young people” are aged 18-49, I was definitely taken aback. Since the birth of the internet, my generation (says a proud 20-year-old) has been online for over half our life time, and it’s my opinion that the large demographic of 18-49 wouldn’t really capture everything you want out of it. I wouldn’t be surprised if more than 90% of people aged 18-35 are e-patients, while the 36-49 age group would be more like 60%. I have no hard facts on it, this is just a speculation, based on how often I have found advice for other ‘young people’ in the 35-49 range (my friends’ parents specifically) because they had not even thought to look at the internet as a credible source.

  7. Nancy Shute says:

    RT @SusannahFox ‘s cheat sheet on her new Pew report: Mobile health is a winner; FB/MySpace/Twitter for health big losers

  8. Susannah Fox says:

    Ha! I thought I would please people by calling the 18-49 year-olds “young” but I guess a 20-year-old does not find it an easy fit to be lumped in that group.

    It was actually pretty surprising to see how the 40-somethings held their own in this survey. I expected to see bigger differences among the age group subsets (18-29, 30-49) but when it comes to engaging in social media related to health, they are more united than divided. It’s the older internet users who are still pretty tuned out when it comes to the social hive – present company excepted (ducking for cover from my Boomer colleagues).

  9. Alan Greene says:

    Susannah, I think you may have ducked for cover cover just in time!

    But before I say anything else, “BRAVO! Another tour de force.”

    After your last comment above, you’ve got me wondering how to put together your data about the unity of 18-29 and 30-49 age subsets with Kevin’s observation that those in college now seem more plugged in than those in college even just a few years ago.

    Perhaps it’s more the year than the age.

    When I visited potential colleges to attend a few years ago with my now-22-year-old, a few students had laptops open during some lectures. When I did the college visit thing with my now-20-year old, about half of the students had laptops open during class. But when I visited colleges with my 18-year-old daughter this year, almost every student in every class had laptops open and were online taking notes, checking email, instant messaging, bidding on eBay, reading the news — and searching on whatever came to mind. Big change. Fast.

    But it’s not just in lecture halls. It’s restaurants, parks, trains, coffee shops, and other venues where laptops weren’t as common two years ago. And desktop computers are starting to become a bit like landline telephones.

    Also, I wonder if your data would have looked different one year ago? My “old” high school friends discovered Facebook about a year ago. Perhaps the “time to spread” from demographic to demographic is decreasing, so it’s harder to catch age stratifications under 49 unless the targeted questions come in the first months of a new platform or technology.

    But these are minor musings. Your compelling data is the state-of-the-art map of our current landscape.

  10. Susannah Fox says:

    Thanks, Alan!

    It’s kind of like the joke about Microsoft stock in the 90s: we should have bought NOW, or NOW, or… NOW.

    We dip our hands into the survey data stream and pull out what we can catch at that moment. I wondered if we’d waited too long and missed the toddler phase of social media & health, but apparently not. Now we’ve got benchmark data that everyone can use – our survey questions are already posted to our site for anyone to replicate in their own work.

    Stay tuned to for a special look at today’s college students – we’ve got data and are analyzing it now.

  11. David Harlow says:

    Q @leeaase @edbennett Pew survey (@susannahfox) sez 6% of pts engage via SoMe. Consistent w yr exprnc? Thoughts? #hcsm

  12. Another kudos for creating and updating our bible. (I wish the other one could also be updated at such short and regular intervals).

    Kevin’s remark about the much deeper involvement of the younger crowd is probably spot on. Alan’s remark about the constant increase of laptop use in colleges is definitely part of the explanation. For today’s college students the ubiquitous computer is just a reality, not something to be discussed.

    But there is another underlying element that explains the deep transformation of college students into e-patients: the constant flow of news regarding the inability of a fast growing percentage of the US population in obtaining healthcare insurance. I have heard on NPR quite a few interviews of college students stating specifically that they expect not being able to get HC coverage, after they graduate. This directly relates to one of my earlier posts (Will The Great Recession Create Millions of e-Patients?). Maybe Susannah’s forthcoming analysis will shed some light of how prevalent that trend is.

    My slightly informed guess is that it will turn out to be a generational change, one of those unexpected events who profoundly change a society.

  13. Judy Feder says:

    Susannah — the report is fabulous, thank you! I know we got a sneak preview at Health 2.0, but it’s so much better to have the full set of data. I’m particularly happy to have that number of 60% of e-patients, or 37% of adult population, have engaged in at least one e-health social media activity. That’s getting to be a real number!
    Kudos, kudos, kudos!

  14. Susannah Fox says:

    Thank you for the kudos! I meant what I wrote in the Acknowledgments (

    “Some of the best ideas for this research came from all those who write and comment on, The Health Care Blog, and Twitter. We look forward to continuing the conversation!”

    This study brought together so much of what we have been talking about here for the last 3 years (really, counting how forward-thinking Tom was, for the last decade).

    And to give more credit, the partnership with the California HealthCare Foundation absolutely kicked my game up a notch by providing funding for Spanish-speaking interviewers, a cell phone component, and a California oversample. Stay tuned for more updates this summer on that oversample data!

  15. Eric Rumsey says:

    RT @SusannahFox The Social Life of Health Info, PEW report . cheat sheet on

  16. RT @WorldMedCard Health2.0 IS hip: Survey 83% of internet users (61% of adults) in US look online for #hcsm

  17. ehealthgr says:

    RT @medxcentral @WorldMedCard Health2.0 IS hip: Survey 83% of internet users 61%adults US look online for #hcsm

  18. SusannahFox says:

    @jackbilson3 Thanks for diving in to the full report not just my cheat sheet ( Let me know if you have questions!

  19. SusannahFox says:

    .@RadioBabe thanks for telling it like it was at #pdf09 and please know I do have lots more to say. 5 min version:

  20. […] e-patients,net: Social Life of Health Information ‘cheat sheet’ […]

  21. Shwen Gwee says:

    #FDASM – For PEW research by @SusannahFox on "The Social Life of Health Info", see: (summary:

  22. SusannahFox says:

    Regarding random surveys: @ePatientDave was part of our sample, on his cell since he's so GenY:

  23. Howard Luks says:

    RT @SusannahFox: Regarding random surveys: @ePatientDave was part of our sample, on his cell since he's so GenY:

  24. Cris Delnevo says:

    what R the odds?! RT @SusannahFox: Regarding surveys: @ePatientDave was part of random cell sample

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