June 11, 2009

The Social Life of Health Information

The Social Life of Health Information

As usual, there are more readers and listeners than writers and creators.

Health care, including online health research, is a social activity. Since 2002, Pew Internet Project surveys consistently find that about half of online health inquiries are on behalf of someone else, be it a family member, friend, or someone else. In addition, two-thirds of internet users who have gone online for health information talk with someone else about what they find online, most often a friend or spouse. A handful talk with a medical professional about what they find online. The survey question did not specify whether these conversations take place face to face, over the phone, or online.

While offline conversation about health information may be robust, it seems that the online conversation about health may be lopsided. There are many more readers and listeners than there are writers and creators of online content.

Again, 6% of e-patients, or 5% of all adults, report that they have posted comments, queries, or information about health or medical matters in an online discussion, listserv, or other online group forum. Five percent of e-patients, or 4% of all adults, say they have posted comments about health on a blog. And 8% of e-patients, or 7% of all adults, say they have participated in an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems.

These findings echo the well-established observation that there are always more passive consumers of information than active contributors. Indeed, Forrester Research has grouped internet users into six social technology types: creators (keep a blog), critics (post comments, reviews), collectors (tag content), joiners (social network sites), spectators (read blogs, listen to podcasts), and inactives (none of these activities).17 As Charlene Li writes, “not everyone is cut out from the start to be a Creator; nor is everyone inclined to jump with both feet into social networking,” and this survey finds that health-related social media engagement follows the same pattern.

Age is the only significant factor when looking at traditional demographic groups and active use of the internet for health communication. Women, men, e-patients of various levels of education, whites, African Americans, Latinos – all are equally likely, once they are online, to post their own health experiences or to access the resources created by other people.

E-patients with wireless access are more likely than those who do not have mobile access to have pursued nearly all of these avenues of health communication, which underlines the Pew Internet Project’s finding that on-the-go devices draw adults further into online engagement.18

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.”19 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.20

Social networking sites are used only sparingly for health queries and updates.

Thirty-nine percent of e-patients use a social networking site like MySpace and Facebook (about the same percentage of all internet users age 18 and older).  Of those:

  • 22% have followed their friends’ personal health experiences or updates on the site.
  • 15% have posted comments, queries, or information about health or medical matters.
  • 12% have gotten any health information on the sites.
  • 6% have started or joined a health-related group on a social networking site.

Twelve percent of e-patients use Twitter or another service to share updates about themselves or to see updates about others (again, about the same percentage of internet users age 18 and older use status update services).21  Of e-patient Twitterers, 12% have posted comments, queries, or information about health or medical matters.

Age is a good predictor for social networking use. Two-thirds of internet users between the ages of 18 to 29 use social networking sites, as do 35% of internet users ages 30 to 49, 11% of internet users ages 50 to 64, and 7% of internet users age 65 and older. In addition, 19% of internet users between the ages of 18 to 29 use Twitter or another service to share or see updates, compared with 11% of internet users ages 30 to 49, 4% of internet users age 50 to 64, and 2% of internet users age 65 and older. However, once they begin updating their status or maintaining a social network profile, internet users of all ages are equally likely to have used these sites for health queries, comments, and updates.

There are no significant differences among other demographic groups when it comes to use of social networking sites for health. Women, men, e-patients of various levels of education, whites, African Americans, Latinos – all are equally likely, once they are using social networking services, to use them for health queries and updates.

As more adults join social networking sites, there may be a health benefit simply from the friendship and fellowship found online. Research supports the notion that “a stable and supportive social network improves health outcomes for people with a wide range of conditions from heart failure to post-partum depression.”22 Twenty-somethings with few health concerns now may find that their interests shift as they age. Older users, gaining confidence, may begin to use the sites for a wider range of pursuits, including social support during a health crisis. There is evidence that online peer support is attractive to older adults and those living with chronic conditions, particularly if it is delivered on technology that is familiar and convenient.23

  1. Charlene Li, Josh Bernoff, Remy Fiorentino, and Sarah Glass, “Social Technographics: Mapping Participation in Activities Forms the Foundation of a Social Strategy” (Forrester Research: April 19, 2007). See: http://blogs.forrester.com/groundswell/2007/04/forresters_new_.html
  2. Horrigan, 2009
  3. Sarasohn-Kahn, 2008
  4. Jen McCabe Gorman and Maarten den Braber, “Semantic Web Sparks Evolution of Health 2.0” (September 2008). See: http://www.scribd.com/doc/5535162/Nexthealth
  5. Amanda Lenhart, “Adults and Social Network Websites.” (Pew Internet Project: January 14, 2009). See: http://www.pewinternet.org/Reports/2009/Adults-and-Social-Network-Websites.aspx
  6. Amanda Lenhart and Susannah Fox, “Twitter and status updating.” (Pew Internet Project: February 12, 2009). See: http://www.pewinternet.org/Reports/2009/Twitter-and-status-updating.aspx
  7. Sarasohn-Kahn, 2008