Pew Internet Reports – The Social Life of Health Information

The Social Life of Health Information
by Susannah Fox, Sydney Jones
Jun 11, 2009


I chose this article because I’m interested in the prospect of online medical records and the use of connective technology in healthcare. Though the research in this report is geared towards patients searching for medical advice on the web, it’s still applicable to the extremely valuable resource that online medical advice, journals, and forums can be to the overall health of the nation.

After checking my Google Reader, I saw that Amanda had already chosen and written a blog response to this report. Quite a good one actually. So I’ll hit some of the basic facts, but mainly focus on the social dimension of health related searches.

Susannah Fox, the Associate Director of the Pew Internet & American Life Project, began the study in 2002, tracking the online behaviors and trends of “e-patients”: Internet users searching for health information online. First published in the report “Online Health Search 2006”, the Pew Internet Project has continued to follow the important trends of online health information.

While the figures may be of little shock to someone who studies new media, these are indeed sobering statistics for the likes of the American Medical Association and other medical professionals. Fox found that 83% of web users – which accounts for 61% of all Americans – search for medical information online. Every day, some 8 million Americans search for medical information – the same amount that read blogs, or pays bills, or looks up phone numbers and addresses.* This is not a phenomenon or a trend, but rather an ingrained way of life and use for western culture.

Demographically, e-patients pretty much follow the digital divide. Throughout the study, Susannah Fox finds, with some exception, that Americans searching for medical advice online mirrors the socioeconomic picture of Americans online. While there is still a sharp dropoff with Americans who have a high school education or less, the numbers are improving. Much like the digital divide, More women (64%) than men (57%) search for health information. The availability of a wireless connection greatly improves the likelihood of being an e-patient: 89% of wireless internet users vs. only 40% of tethered or dial-up connections.

*From 2006 report

Right, but do they listen?

In short yes, but there’s still some opposition. 57% of health seekers report that most recent health information session had some kind of impact on how they take care of themselves or care for someone else: 44% described it as a minor impact and 13% described it as a major impact – both figures up from prior years. 41% said their inquiries had no impact on their decisions. While the main impact (60%) was regarding treatment of a particular ailment, a steadily rising number of impacts have revolved around personal care – diet, exercise, and treatment of manageable diseases like diabetes. One figure to note: 38% of those impacted by their search results say it affected a decision about whether (or not) to see a doctor.

Online health information continues to make a mostly positive impact. 42% of all adults, or 60% of e-patients, reported that the information they found online helped them, and this number has been increasing since the study began. The 3% of the population who have or know someone who had been affected negatively by online health information has been holding steady and not increased.

The Social Element

Forresters Six Levels Of Participation

Forresters Six Levels Of Participation

In social media, specifically the blogosphere, the great divide is between those that are content consumers only vs. content producers, and this is where Fox finds room for growth with e-patients. 59% of e-patients have consulted some sort of user-generated content in their health inquiry, be it online news group, website, or blog, online rankings of hospitals and doctors, or news feeds like a health-specific email list. These are content consumers, or what could be considered the Spectators and Joiners of Forrester’s six categories of participation.

However, content producers (Creators, Critics, and Collectors) are lacking, and this is the glaring hole in social online health information. As Fox states, “the activation gap may extend online as there is not universal access to communication technologies. Someone’s “just-in-time someone-like-me” may not be online or they may not be speaking up in public forums.” Only 20% of e-patients have contributed to the same services they use – reviewing health professionals or hospitals, posting comments or discussions in public forums about health issues, and even at the very least, tagging content.

The Pew Report goes on to discuss how healthcare is a social activity anyway. “Since 2002, Pew Internet Project surveys consistently find that about half of online health inquiries are on behalf of … a family member, friend, or someone else.” If an e-patient is already looking online for information and opinions, it is likely he or she will discuss this with others offline as well.

Most importantly in the development of the social aspect of online health information is this passage, which I’ll quote in full. “But while there are currently only pockets of people participating in the online conversation, there is evidence that “when patients managing the same chronic condition share observations with each other, their collective wisdom can yield clinical insights well beyond the understanding of any single patient or physician.” Indeed, allowing patients “to transport the full value of these communities back offline” may hold promise for the integration of new and traditional health care services.”

Social networking sites not specifically dedicated to health concerns – the giants of Facebook, Myspace, Twitter, etc. – do not hold the same wealth of health-specific use. That’s not to say that people are not using these avenues to talk about health-related issues. Rather, once a user begins regularly updating status and maintaining an online profile, he or she is equally as likely to use it for health concerns.


In addition to being interested in the media and social media aspects of this report, I also connected with this research on a personal level. Having recently lost a grandparent to the effects of dementia and Alzheimer’s disease, my parents spent countless hours online, gleaning information from published journals, online resources, blogs and forums dedicated to treating and dealing with Alzheimer’s. Particularly applicable was the fact that half of e-patients were taking on the task of searching for someone else.

In her 2008 remarks at the Health 2.0 conference (in my former home of San Diego, CA), Fox herself analyzes the 2002-2006 findings. Using one of my favorite comparisons, Fox equates the medical industry’s initial unwillingness to acknowledge web technology and patients’ online behaviors to the music industry’s attempt to grasp at a dying business model using scare tactics and ignoring its target audience. The remarks here are spectacular. The “seven words of wisdom” title “Recruit doctors. Let e-patients lead. Go mobile.” is indicative of the change that’s happening with patient-centric organizations who have embraced the e-patient and “Health 2.0”.

Obviously, in Fox’s remarks in 2008 and from the findings in the 2009 report, misinformation is the biggest risk and issue facing e-patients. Compared to the 2006 report, trends do point that e-patients are becoming savvier in terms of the information they find online – the one issue that the AMA camp had with online health information.

In terms of media, the most interesting thing to me was how indicative that wireless broadband access is to medical queries and all internet use in general. Wireless access seems to be the recurring theme in terms of savvy users, but most importantly, it greatly increases the likelihood of content production and sharing. Going along with Forrester’s six categories of participation (which I’ve studied, but can’t remember where or when, maybe in an old blog post?), the biggest gap right now is between consumers and producers. However, as Fox notes, research is beginning to show that amassing information posted by individuals may lead to the integration of new and traditional health care services. This is by far the most important issue that new media and social media can contribute to the medical profession, and it must be taken seriously.

One thing I felt was missing from the report was more specifics on how people react to medical information found online. Obviously, the AMA’s complaint is that since online information is often unreliable, seeing a doctor is best. Thus, when I saw the statistic that “38% say it [health information found online] affected a decision about whether to see a doctor,” I wanted to know: So did these people choose to see a doctor after finding information online…or did they choose NOT to see a doctor? I’d imagine it would be pretty evenly split – but until there’s some more specific research, I’m not sure.


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4 Responses to “Pew Internet Reports – The Social Life of Health Information”

  1. Amanda Says:

    Cool report isn’t it? I was just reading your posting and thinking about the stat that more women than men search for health info. Do you think this goes back to the whole women as caregivers idea? Or is there another underlying issue here? I doubt it has to do with a difference in tech savvy. And of course, the statistical difference is not too vast yet at least. Interesting stuff.

    • brianwaynemiller Says:

      Yeah, I really think it’s the whole women-as-caregivers idea, and that women are generally more proactive in healthcare matters. For example, prostate cancer is much more common in men than breast cancer is in women, but the awareness and early detection behind breast cancer leaps and bounds ahead. Sadly, us dudes just statistically aren’t as proactive when it comes to that kind of stuff.

  2. An answer to my questions – Google Health and Microsoft HealthVault « Brian Miller's NMS 501 Blog Says:

    […] Brian Miller's NMS 501 Blog « Pew Internet Reports – The Social Life of Health Information […]

  3. Response – Pew Internet Reports: Digital Footprints « Brian Miller's NMS 501 Blog Says:

    […] be around – babysitters, neighbors, school administrators and teachers, etc. As I pointed out in my blog about medical searches from a prior Pew report, often times these searches are done on behalf of someone else. I’d imagine the same holds true […]

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