The Social Life of Health Information

In 2000, 46% of American adults had access to the internet, 5% of U.S. households had broadband connections, and 25% of American adults looked online for health information. Now, 74% of American adults go online, 57% of American households have broadband connections, and 61% of adults look online for health information. We use the term “e-patient” to describe this group.

Further, “always present” mobile access draws people into conversations about health as much as online tools enable research.

American adults continue to turn to traditional sources of health information, even as many of them deepen their engagement with the online world.

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.

The social life of health information is robust.

Half of all online health inquiries (52%) are on behalf of someone other than the person typing in the search terms. And two-thirds of e-patients talk with someone else about what they find online, most often a friend or spouse. The survey question did not specify whether these conversations take place face to face, over the phone, or online, but it is clear that the pursuit of health information does not happen in a social vacuum.

A majority of e-patients access user-generated health information.

Health consumers are often looking for tailored information, searching for a “just-in-time someone-like-me.” For example:

41% of e-patients have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
24% of e-patients have consulted rankings or reviews online of doctors or other providers.
24% of e-patients have consulted rankings or reviews online of hospitals or other medical facilities.
19% of e-patients have signed up to receive updates about health or medical issues.
13% of e-patients have listened to a podcast about health or medical issues.

But few are actively writing or creating new health content:

6% of e-patients have tagged or categorized online content about health or medical issues.
6% of e-patients report that they have posted comments, queries, or information about health or medical matters in an online discussion, listserv, or other online group forum.
5% of e-patients say they have posted comments about health on a blog.
5% of e-patients have posted a review online of a doctor.
4% of e-patients have posted a review online of a hospital.
4% have shared photos, videos or audio files online about health or medical issues.

In sum, 37% of adults, or 60% of e-patients, have done at least one of the above activities.

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

Despite the increasing popularity of social network sites and status update services, few people are using them to gather and share health information.

39% of e-patients use a social networking site like MySpace and Facebook and, of those, only a small portion have followed their friends’ personal health experiences or updates, posted their own health-related comments, gotten any health information, or joined a health-related group.
12% of e-patients use Twitter or another service to share updates about themselves or to see updates about others, and of those, few have posted comments, queries, or information about health or medical matters.

Online health inquiries have an impact on decisions or actions and there are clearly more positive experiences than negative ones.

Among the six in ten e-patients who say their most recent search had an impact, mostly minor, on their own health or the way they care for someone else:

60% say the information found online affected a decision about how to treat an illness or condition.
56% say it changed their overall approach to maintaining their health or the health of someone they help take care of.
53% say it lead them to ask a doctor new questions, or to get a second opinion from another doctor.
49% say it changed the way they think about diet, exercise, or stress management.
38% say it affected a decision about whether to see a doctor.
38% say it changed the way they cope with a chronic condition or manage pain.

Fully 42% of all adults, or 60% of e-patients, say they or someone they know has been helped by following medical advice or health information found on the internet. This represents a significant increase since 2006 when 25% of all adults, or 31% of e-patients, said that.1

Just 3% of all adults, or 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 finding that has remained stable since 2006.

Internet users report a surge of interest in information about exercise and fitness.

The percentage of American adults getting exercise and fitness information online has jumped from 21% in 2002 to 38% now – an 88% growth, a more rapid increase than any other health topic covered in the survey.

In addition to fitness, six other health topics have been included in our surveys since 2002, all of which have gained audience share, including information about:

A specific disease or medical problem (49% of adults, up from 36%)
A medical treatment or procedure (41% of adults, up from 27%)
Prescription or over-the-counter drugs (33% of adults, up from 19%)
Alternative treatments or medicines (26% of adults, up from 16%)
Depression, anxiety, stress or mental health issues (21% of adults, up from 12%)
Experimental treatments or medicines (15% of adults, up from 10%)

Five specific health topics were added to the list, including information about:

Doctors or other health professionals (35% of adults)
Hospitals or other medical facilities (28% of adults)
Health insurance, including private insurance, Medicare or Medicaid (27% of adults)
How to lose weight or how to control your weight (24% of adults)
How to stay healthy on a trip overseas (9% of adults)

Change is coming, whether through the spread of wireless devices or generational shifts.

Wireless connections are associated with deeper engagement in social media and an accelerated pace of information exchange. Indeed, those with mobile access to the internet are more likely than those who have tethered access to contribute their comments and reviews to the online conversation about health and health care. And mobile access is on the rise.

Second, adults between the ages of 18 to 49 are more likely than older adults to participate in social technologies related to health. As younger adults face more health care questions and challenges, they may turn to the tools they have sharpened in other contexts of their lives to gather and share health advice.

But in the end, experts remain vital to the health-search and decision-making process. Americans’ longstanding practices of asking a health professional, a trusted friend, or a wise family member persist as patients pursue good health. These are practices which, in the words of John Seely Brown and Paul Duguid “will not budge” and therefore require designers of any new health care application “to look not ahead, but to look around” in order to see the way forward.²