The Social Life of Health Information, 2011

Here it is: my 2010-11 yearbook! Will you sign it?

That’s how I feel about this latest report from the Pew Internet Project and the California HealthCare Foundation: “The Social Life of Health Information, 2011.”  It contains all the insights we’ve gathered over the last year on mobile health, the health information divide, and peer-to-peer healthcare. It also contains updates on social media use in health and a few new activities. If you’re going to read just one of our reports, this is the one.

Here are some new data points:

-       1 in 4 internet users have watched an online video about health.

-       1 in 4 internet users have tracked their weight, diet, exercise routine or other health indicator online.

-       1 in 4 internet users have consulted online reviews of drugs or medical treatments (but very few post such reviews).

The finding that goes against what I might call conventional rumor is that Facebook is NOT a significant source of health information.

Yes, social network sites like Facebook and MySpace have gained ground in the internet population over the past two years. Sixty-two percent of internet users now say they use such sites, compared with 35% of internet users in 2008. However, the percentage of adults who turn to these sites for health information remains low. Just 15% of social network site users, or 7% of adults, say they use the sites to get health information. This is up only slightly from 2008, when 11% of social network site users reported getting health information on such sites.

For the most part, the trends are stable for all of the questions we asked in the 2008 and 2010 surveys – health topics, hospital review sites, doctor review sites, consumption & creation of user-generated content related to health.

The major difference is how we wrote up the findings. In the 2009 report, we emphasized the “e-patient” or “online health seeker” population – internet users who go online for health information. After talking with policymakers and industry leaders about how internet use fits in to the overall picture of health care in the U.S., we decided to emphasize the “internet user” population and, in some cases, the U.S. adult population. In that way, readers can compare our results to other studies’ results which focus on internet users and/or U.S. adults. The full topline at the back of the current report shows both the “online health seeker” and the “internet user” results so people can easily compare the ’08 and ’10 surveys.

If you have only a few minutes, please read the summary of findings.

If you have a half-hour or so, please read the full report.

Then come back here and let me know what you think! I’m eager to discuss the findings.

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Comments

41 Responses to “The Social Life of Health Information, 2011”

  1. Joshua Seidman says:

    As always, your data is invaluable, and your analysis is insightful. Thank you!

    One question: In my first quick reading of the report, I didn’t see trend info (comparisons to previous surveys). Did I miss it? If so, please point me to the appropriate pages/tables. If not, do you have and can you provide?

    • Susannah Fox says:

      Great question!

      When we first got the survey results back, I quickly scanned for interesting comparisons between 2008 and 2010…and found not much had changed. That didn’t surprise me since we rarely record big jumps in online activities (banking, travel reservations, and social network sites being among the exceptions).

      The stability of the trends rather pleased me, actually, and made me want to dig deeper below the surface. For example, I wrote the “Health Topics” report as a health information divide story because it was a new, valid way to look at a very stable trend (80% of internet users look online for health info) through the lens of different demographic groups.

      If you want to compare the two surveys, or go back even further, download the topline (PDF): http://www.pewinternet.org/~/media//Files/Questionnaire/2011/PIP_Sept_2010_Topline.pdf

      All of the trend questions are in that document and I would LOVE to see other analysts write about them. That’s also why we uploaded the full data set to our site along with this report:

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

      I will write more about what I see, too — thanks for the encouragement to do so!

  2. Brian Ahier says:

    I was also trying to find trending in a comparison between the two surveys. I expected some sharper changes based on the step rise in mobile
    (http://www.morganstanley.com/institutional/techresearch/pdfs/MS_Internet_Trends_060710.pdf)

    I was very interested in some of the disparities in using mobile apps to manage health. The results on race were particularly striking and unexpected

    (http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info/Part-1/Section-6.aspx)

    One thing was disconcerting was the lack of use if rating and review sites. I’d bet the use of online reviews to choose a plumber or electrician is much higher than what is being used to choose care providers.

  3. Hello Susannah, Congratulations on your latest Great report! My take on the data is that we are earlier on in the social media use of healthcare than people think. Health information seekers began at the beginning of the web and remain a major force at 80%. The use of social media to discuss health, look for reviews is in the teens. One in four people having seen a health video is also lower than conventional wisdom, even if you take the 37%, still lower than imagined. And 9% for health on mobile really brings the market back to reality. So, while the trend will be for health to go social, it’s going to take a few years still. Do you agree? Thanks again Susannah.

    • Brian Ahier says:

      I think that adoption will continue to escalate, and the rate will likely increase….

    • Susannah Fox says:

      Hi Denise, thanks so much for sharing your perspective (and for writing it up en francais on your blog). I love hearing from you since you have your finger on the EU pulse in addition to keeping up with the scene in the US.

      I have lost track of conventional wisdom since I find myself switching between so many conversations – tech people see health one way, health people see tech another way, policymakers look at it from one angle, consumer advocates see it another way. What I hope our research can do is settle the conversation down a little, at least as the data pertain to the US.

      I also shy away from predicting the future, at least in concrete terms, but I do agree with Brian that adoption (certainly mobile adoption) will continue to escalate.

      But will self-tracking become more popular? Will a health app or two break out big time? Will online health video take off as a teaching/learning tool?

      All I know is that I shouldn’t make predictions.

      Pew Internet didn’t foresee online banking’s meteoric rise (but we tracked it and identified it when it happened). Same thing with music downloading. Same thing with online travel reservations.

      We’ll keep tracking and listening – please keep innovating and reporting from the frontier!

    • James Ellis says:

      1) There is no question that the numbers will grow. The internet has done nothing but expand by leaps and bounds since its inception, and I haven’t seen any reason to think it’s will slow. More information begets more information which begets better information tools which begets better information.

      2) We’re on the cusp of video being a way people expect to learn. Only last year someone asked me how to embed a YouTube video into a Powerpoint. I could have written it down, but instead pointed them to a YT video that showed them what to do. her response: I didn’t even think to look in YouTube for the answer. As Google learns to leverage the content in YouTube (and as the costs for making simple videos keeps dropping, and as bandwidth keeps rising and as more and more tools like TVs and Blu-Ray players connect online, and as Google does better and better job transcribing audio into text for text-searching) video will be a huge way of learning. How long until we assume our doctors are watching YouTube videos to see how to do a procedure better and faster?

      3) Social Media is about to be normalized. It’s a term that’s about to be thrown on the pile that currently contains things like “hot links,” “web log,” “vlogging” and “peer-to-peer,” the technology is about to be absorbed into the idea of what we call “the web” or “online.” The ability to comment on someone’s comment is social (just like email and IM), but it’s all glommed together. At normalization, the question shifts from “Have you looked for health information on social media” to “Have you looked for health information online” which will continue to climb. We might be looking for trends on a micro level while losing sight of the macro.

      4) What is health info? My favorite number in the survey was how many people are tracking their weight or exercise online. This is the tip of the spear of “do it yourself” health. People tracking more and more personal data in cloud-based areas is going to be a huge audience. I imagine a player who will announce a standardized format (probably an XML schema) of health data that all these little apps and tools will use to collect tiny bits o’ data about people’s behavior and activity, aggregate it for an HCP and we’ll start seeing new understanding of how our body’s work and respond to different stimuli (pharma, activity, diet, etc). This is a huge market opportunity.

      That’s my thought.

      -James
      @digital_pharma

      • Susannah Fox says:

        W00t! We’ve made the jump to hyperspace (from a quick Twitter conversation to a blog conversation). Thanks so much.

        I want to pick up on your point about social media. It is so often confused with social tools (which could include something so simple and un-media-like as a listserve) that I’ve nearly given up on trying to help people (often reporters) note the difference.

        It is becoming normalized, which is one reason pollsters like me have to write survey questions as broadly as possible, so hipsters can answer the same questions we pose to newbies. Suggestions always welcome on that score.

        • James Ellis says:

          Fair points, all.

          I will say if that most people stop seeing the difference between social media and social tools, then there’s probably not much value in differentiating anymore.

      • David Harlow says:

        Re: #4 – Is this different from what http://www.continuaalliance.org is doing? If yes, I’d like to understand the difference. If no, you should meet my 14 y.o. son — he “invented” Yelp last week.

    • inchoate but earnest says:

      Some semantic haze here. People have ALWAYS, always, always dealt with health issues “socially”; “tribally” may be a more descriptive term for it. The overlay of particular technologies to do it is the “new” part. That part MAY produce meaningful change in care habits, even care results. But “health information seekers began at the beginning of the web” doesn’t conform with readily available evidence at all. Tech lowers barriers to that seeking behavior. It doesn’t necessarily IMPROVE the results of that behavior, in the sense of “by doing it, people are healthier”. Evidence for that will likely be longer in coming, and plenty more controversial.

  4. Susannah Fox says:

    Please keep the questions & comments coming! Each one brings out a different aspect of the research, which we then use to improve our analysis (and collect ideas for the next round of surveys).

    Press & blog coverage of the report has been highlighting different angles too. Here’s a quick rundown of what’s been published (that I’ve seen – please post more if you see them):

    HealthcareITNews.com (caregivers and wireless data)
    http://www.healthcareitnews.com/news/pew-report-online-health-engagement-growing

    California HealthCare Foundation (summary, with links to previous reports)
    http://www.chcf.org/publications/2011/05/social-life-health-information

    EyeOnFDA (the meaning of the findings for pharma & FDA)
    http://www.eyeonfda.com/eye_on_fda/2011/05/valuable-information-from-pew-valuable-insights-result.html

    HealthPopuli (health search is mashed up and increasingly mobile)
    http://healthpopuli.com/2011/05/12/health-information-gumbo-peoples-health-searches-are-mixed-and-increasingly-mobile/

    O’Reilly Radar (3 ways the internet is shaping healthcare – mentions Quantified Self movement)
    http://radar.oreilly.com/2011/05/3-ways-internet-shapes-healthcare-pew.html

    WCG Common Sense (what the data mean for the future)
    http://blog.wcgworld.com/2011/05/pews-new-data-and-what-it-means-for-the-future-of-health-info

    The Lamp (health literacy and media literacy)
    http://www.thelampnyc.org/2011/05/12/how-the-latest-pew-report-points-to-link-between-health-literacy-and-media-literacy/

  5. Susannah Fox says:

    I’m struck by a quick comment that Mark Scrimshire posted on Twitter:

    “1 in 5 adults means we have gone mainstream” – @ekivemark

    I’m pretty sure he’s referring to the data point that 27% of internet users (which is the equivalent of 20% of adults in the U.S.) are self-trackers. They use the internet to track their weight, diet, exercise routine, symptoms, or other health indicator.

    I’d love to hear more opinions from the field on this point.

    • I am surprised about the large % of self trackers. (that takes work) That is a trend I am interesting in exploring more. Also, mobile, clearly is a market that has huge growth potential. (I saw that last week) I am actually disappointed that there are not more people online checking for medical info. I would be curious what sites (e.g. quality of information people are exploring?) Also, is there a stat for people who check medical research papers? And, can we ferret out if the same people looking at vid and medical info are they the same. Sorry if this is covered and I am looking deeply. Unfortunately I have to wait to dig into the report until early next week. :(

      • Susannah Fox says:

        Hi Alex! We didn’t include a question about how many people look online for medical research papers. I might prefer to get supply-side numbers on that instead of demand-side (meaning: look at PubMed traffic, for ex.)

        The information quality question is one that we haven’t touched since ’06, mostly b/c we thought we’d taken the topic as far as we could in a phone survey.

        The study I most admire was done in 2002 by (drumroll) BJ Fogg, who hosted the wonderful Mobile Health event at Stanford last week.

        Here it is:

        http://www.consumerwebwatch.org/dynamic/web-credibility-reports-evaluate-abstract.cfm

    • Hi Susannah,

      The percentage of self tracker is actually surprising (trendy Christmas gift effect?).

      I am less astonished by the low use of social networks.
      Don’t you think that what Google calls “the visible web” is probably too “visible” (privacy-less) for health matters?

  6. Gary Wolf says:

    One thing that might make the self-tracking data in Susannah’s great report less surprising: much of this tracking may not BEGIN as health tracking, or may not even be PRIMARILY health tracking. Yes, it seems like a lot of work to keep a careful diary of, say, medical information or “health records.” But pedometers, blood pressure monitors, calorie counters, menstrual calendars – all the Quantified Self tools and practices -. are part of a more general trend that goes beyond health and even beyond “fitness.”

    I wrote a bit more about this at The Health Care Blog. If the PEW report had been out before I completed that post I would have taken advantage of it!!

    LINK: http://thehealthcareblog.com/blog/2011/05/12/the-quantified-self-and-the-future-of-health-care/
    I suspect some of this is backing into health, just as Internet use for casual social purposes (“mom’s on email!”) backed into the more complex corporate/enterprise/retail scene. The classic bus. school framework is: disruption. So the number is only surprising when the perspective is narrowed to health care.

    • Susannah Fox says:

      OK, I *love* the “mom’s on email” analogy. That will go straight into my folder of stolen quotes, along with BJ Fogg’s “mobile health is at the Friendster stage.”

      Everyone: go read Gary’s THCB post.

  7. Ted Eytan says:

    Susannah,

    Thank you again for being a trusted source of information!

    With that in mind, I am going to be honest and say I did not walk way after reading the report thinking that the social life of health information is “robust” – yet.

    As you noted, people still want to get health info from health professionals and these folks are by and large not online (yet, working on this!). At the same time the numbers seem to show stability around behavior that is more retrieval than dispersal. This does not seem to equate to conversation in my mind. I was actually thinking, “health seems to be personal – more people are tracking, but they are not sharing.”

    I kind of don’t think 1 in 4 is critcal mass. Take a look at this tweet:

    https://twitter.com/colbyv/status/69060846466240512

    That to me is critical mass.

    All of this said, this data does not disappoint, it helps because it establishes a hopeful connection between what people want and what we need to deliver – interaction with the people they trust online. And not to make this about health professionals at all, I see this as a means to an end, which is the normalizing or community approach to maintaining optimal health.

    And the good news again, as your data predicts, is that online services that are linked to health professionals are taking off like wildfire.

    Your turn, thoughts?

    Thanks for moving health care in the right direction,

    Ted

    • Susannah Fox says:

      Yes! I love critique & questions – more, please, and thank you, Ted.

      I smiled as I wrote that line in the summary of findings (“The social life of health information is robust”) because it reminded me of how every President proclaims, “The state of our union is strong.” And I believe in what I wrote, just as every President believes in that line, because the whole is different, and more, than the sum of its parts.

      One part of my perspective is skewed by having spent the winter reading hundreds of stories gathered in a survey of people living with rare disease — online health Olympians walking among us.

      Another part of my perspective is skewed by the macro picture — all the conversations & activity happening offline as well as online. I count that stuff in my assessment of the social life of health information.

      I love the new GroupHealth stats included in that tweet you highlighted. And I love the comments above regarding the challenge of measurement. I’m fully aware that a job like mine probably won’t be necessary in 10 years – the transition to a new culture will be complete and we won’t need to constantly measure it to be sure that it’s really happening. It will just be.

      Or will it? I just got back from a lunch where I was seated with some people I’d never met. They asked what I do for a living and we got into a great discussion about how the internet is changing different industries. “Is health care going to improve because of the internet?” they asked. Yes and no, I said. People can now network their way to better health information – but only if they have access and the literacy skills to understand it. People can identify cutting-edge treatment centers for their conditions — but they may not have the resources to transport themselves to a new city or pay for the treatment that they now know they need. Is that an improvement?

      I think so. What do you think?

      • Susannah Fox says:

        One more refinement:

        The internet enables people to find out what they’re missing. Is it better to know? Or better to not know?

      • Ted Eytan says:

        Susannah,

        I would say do not plan to be retired anytime soon (unless it is by choice, of course)!

        Yes, I totally agree, and the context really helps – I guess I would refine my comment to say that the picture that you’re painting is more full than the words in the report, and that’s why the conversation after the publication allows the data to live and breathe.

        With that in mind, I hope what the data does is encourage people to strive, not make them feel that the work is done. I imagine that there are more and more people aware of the possibilities than ever before, with greater expectation that the loop be closed with the system created to achieve those possibilities. It’s great positive pressure.

        Perhaps in a future survey you might ask about this – what do you want to do (and with whom) that you are not doing now? If things developed the way you hoped they did, how would you be using these tools to support your health (and with whom) in 5 years?

        A colleague just posed this one to me on Quora…maybe you and others can help with the answer…Quora: How will social media change the way care is delivered in five years? Answer: http://qr.ae/E92y

        Because of the diverse people that you reach, the answers you provide are always full of impact for people like me. I celebrate every word on the digital page…

        Best,

        Ted

  8. Susannah,

    Thanks so much for the outstanding report, data, and thought-leadership in this area. As I read through the great comments, I’d like to approach the self-tracking data from a different perspective and say that I actually think the self-tracking numbers may be low. I think there are numerous “self-trackers” out there that are simply falling under our radar.

    I think Gary hits on the key issue perfectly when he uses the word “diary.” (If you haven’t read his post yet on the THCB, don’t miss it). Perhaps we need to step away from the concept of gadget-driven tracking. Reframed another way, I think many folks are ‘journaling’ or just chronically their health routinely – it’s indeed like keeping a diary, but they may not consider themselves trackers.

    My favorite self-tracking example right now is a YouTube video (this also underscores the video data in the report, as well as Jame’s comment about video and learning). It’s entitled, “Weight loss women before and after incredible journey!” ( http://www.youtube.com/watch?v=-ws-yl37lWE) It’s the online diary of the weight loss of Samantha. Samantha shows screen shots of her scale (starting weight is 300). She takes photos of herself with her cell phone camera (she doesn’t use an app, but still embodies mHealth). Samantha is self-tracking – with a sound track!

    The video has been viewed over 1 million times. And if you read through the comments, you realize how many others are tracking their weight. If you start typing “weight loss…” into the YouTube search box, the autocomplete suggestions include “weight loss before and after,” “weight loss transformation,” and “weight loss journey.” Are these folks ‘self-trackers’? Most likely. Would they label themselves as such? Maybe. Does YouTube represent an online health tracking community? You bet.

    So, three cheers for the self-tracking and video data – we now have some great baseline metrics that I suspect will rapidly rise in the next iteration of these stellar reports!

    Carol

    PS Speaking of videos and self-tracking, check out Mathew Holt’s “Coco the Health 2.0 Baby”
    http://www.health2news.com/2011/05/13/coco-the-health-2-0-baby/

  9. Thanks, Susannah. A pleasure to witness your perspective and translation. And always, to read your data.

    Let me just affirm Ted’s comment: I don’t think you’ll be retired anytime soon; we’ve become dependent upon your work.

    I used a lot of this data when I presented to 75-100 docs over the weekend at the WA state med assoc leadership meeting. I learned a ton from the group of physician leaders before and after my talk:
    1) Physicians want to be trusted. Seemingly simple thought but one we need to focus on when motivating physicians to get online. I think the patient’s rising use of the internet to learn about health has deflated personal-physician-value-esteem. I didn’t realize it until just now. Social networks feel intimidating not only because of the discomfort/unfamiliarity with the tools, but because of the power of voice/story in social feels insurmountable and the work in the office to deconstruct myth or realign is too difficult. I’d not spent time on this feeling– that as doctors “lose” to the speed of the internet, they are de-incentivized to go there.
    2)The docs liked the point (that I got from your work) that in a time of need, patients still turn to their doctor for opinion (not the internet). Case in point: my mother became ill the day I needed to leave town for this conference. She reads tons of blogs (she is 66), follows my work, and reads online about her health condition. When she became ill, she wanted to talk with her doctor. THIS IS SOMETHING WE MUST AMPLIFY to help motivate physicians to join me online. If her doc had been online, my mom would have been there instantly. We want available partners in our health. Docs are still important to us; if we could glean their insight at 2am, we would.
    3) Most physicians want to be available to their patients but simply don’t have the luxury to do so. We need more 101 level conferences on how to use Twitter/FB/blogs to communicate expertise. I missed the boat here. Some docs in the audience didn’t know how FB worked.
    4)When I talk about avoiding redundancy (instead of talking with patients individually about car seats for example, I can write a blog) physicians nod their heads. We have to figure out how to integrate communication tools into work flow so that we can stop saying the same things over and over again and spend more time with individual patient needs. Lots of preventative care could be online/mobile/video/waiting-room videos. We need to get funding/insurance reimbursement and normalize this in primary care practices.
    5) Practicing physicians also nod their heads when I take the stand that we should be compensated for our work/writing/use of social media. Leaders in health do not. This disconnect needs to be examined.
    6) Dr Thomas Lee (Harvard Prof and CEO of Partners health) spoke at the conference, too. He mentioned how they were reimbursing MDs to do direct e-mail to patients…something like $1-$2/e-mail with a quarterly cap. LOVE IT. This is how we will value and integrate digital communication to partner with our patients. What if I got a $10K grant (not that hard, I suspect) and piloted a program where I coordinated 10 physicians to tweet? $1 a tweet and capped then at 1K tweets. OUR WORLD would learn something with 10K new physician authored tweets.
    Ideas?

  10. Good grief–Sorry about the numbering. Can you tell I added two points? Susannah, please feel free to change the 1-2-3-4-3-4 to 1-2-3-4-5-6 :-)

  11. Alex Fair says:

    Thanks Susannah, Ted, and the rest fo the Docs and Patients joining the conversation here. Really an excellent read.

    I just wanted to share one experience.

    My friend G. needed a pediatric ENT in NJ a few weeks ago so she posted the question on facebook. I saw it and went to respond, assuming no one knew as many doctors in our circle as she or whould have such excellent info at their fingertips (I do run a site for this purpose).

    Fortunately I looked up at the comment stream before opening my mouth. In a mere 56 minutes she had 29 suggestions, 6 of whom were for the same guy.

    This is the true power of HCSM. The over the fence conversations, not just about doctor selection, but anything. With SM they are super fast, automated, and most importantly, effective.

    Once again thanks.

    • Susannah Fox says:

      Thanks, Alex!

      I’d like to do more qualitative research (or hear about it if anyone else has) regarding people’s use of social network sites for health. Your story rings true and yet our findings also ring true (ie, FB isn’t a significant source of health info).

      In any case, your point about the true power of health care social media is spot on — it’s the over-the-fence conversations that now happen in public, in wider circles, and faster. In case you missed it, my favorite expression of this idea is “Healthcare Out Loud” – see http://e-patients.net/archives/2011/02/health-care-out-loud.html

  12. Susannah,

    Thank you for providing such a wealth of great information. And thanks to the other commenters for bringing your insightful perspectives to the table as well. I’ve enjoyed this discussion quite a bit.

    My background is in clinical trials, specifically patient recruitment, and I just posted a blog post about the report from this perspective. If you are interested, here it is:

    http://rebarinteractive.com/clinical-trials-and-online-health-information-seeking/

    Susannah, I would be curious if you have any interesting data with regard to clinical trials that was not included in the report?

    Thanks again for putting this great report together!

  13. Jeff Stanger says:

    Great report Susannah and Pew Internet. Lots in there. It looks like Web 1.0 information-seeking appears to be far outpace Web 2.0 social-layer interaction. Will be interesting to watch this gap over time. I posted about the report here: http://digitalinfo.org/snippets/2/

  14. [...] The Social Life of Health Information, 2011 (PDF) tags: healthcare socialmedia information The Social Life of Health Information, 2011 | e-Patients.net tags: healthcare socialmedia information Social media in finance: Users want tangible benefits, not [...]

  15. Thanks again for another very helpful report. The data clearly shows that way too many older adults and persons with disabilities are not able to benefit from online resources, for a variety of reasons. We’re continuing our efforts to reduce this persistent digital divide.

  16. [...] My friend Susannah Fox (@susannahfox) research shows, year after year, that people most want to receive health information from a health professional. At the same time, they are also engaging in the use of the Internet to research health information and network with others doing the same, but not at the level that we should expect (see my uppity comment on e-patients.net here). [...]

  17. [...] “27% of internet users track health information” (Susannah Fox’s famous report The Social Life of Health Information, reported here) [...]

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