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Is there a Doctor in the House? No, but there’s a Computer and a Chat Room…

A few years ago, I was co-teaching a consumer health class to library school students. In addition to the traditional health websites, my colleague presented a few examples of user-generated content—sites where ordinary people were posting stories about their own health conditions on discussion lists or on their personal blogs for anyone to see. One particular example involved a young woman who had a suspicious mole that turned out to be a type of skin cancer. She posted her story and pictures on her blog, which elicited a flood of responses from people with their own stories. Another example was Ronda’s Migraine page, a support community that offers a journal area where people can post their own stories, a live chat area and discussion forums. This site was started in 1996 and is still going strong!

The adoption of social tools and technologies by patients and health consumers began over a decade ago, long before the term Web 2.0 was coined. The trend of using social networking sites for health information is examined in a June 2009 report by the Pew Internet & American Life Project, The Social Life of Health Information by Susannah Fox and Sydney Jones. This report updates past research and highlights trends that have not been studied until now, including the use (or avoidance) of various social networking venues to seek health information, publish personal stories or contribute to discussions.

The increased integration of the Internet into our daily lives has fundamentally changed the way we seek health information. In the not-too-distant past, if a person needed health information, he or she might look it up in a book, ask a friend or family member, visit the library, or consult with a doctor. More recently, social networking tools have gained traction, and this too has had a significant impact on how and where people look for information. Human nature is to seek out others “like me.” People want to connect with others who have similar experiences, lifestyles and opinions, and social-oriented health sites fulfill this need. When health is the issue, social sites can serve as a support or coping mechanism, a common ground for discussion of symptoms and treatment options, or a place to ask questions and learn from the experiences of others.

The Internet has opened up a very large door to the world, a world full of others like us whom we can talk to and compare notes. It is the virtual equivalent of striking up a conversation with someone in the specialist’s office or telling your story in a support group, where there will be a common interest in your specific condition. The Pew Report states that while the majority of health information seekers are actively looking for user-generated content, only about 37% of these users post content of their own. It is important to note that the Internet provides a certain amount of anonymity. An individual might feel shy or embarrassed to discuss a health issue in person, but the barrier is removed with the perceived sense of privacy and anonymity of the online venue. However, the exception to this is sites like Facebook or MySpace. It appears that the nature of these sites inhibits, rather than promotes, sharing of personal health information. It may be due to the network of personal and professional contacts that might see the information. People may be comfortable sharing health information with certain close friends in person or complete strangers online, but not necessarily with co-workers or casual acquaintances in either arena.

Some of the trends in the Pew report are not surprising, such as the growth in the number of people using the Internet for health information. Currently, 61% of all American adults seek health information online, a 36% increase since the year 2000. The percentage of adults seeking exercise and fitness information has jumped more than 88% since 2002, making this the most sought-after topic area covered in the survey. When combining all of the different types of social sites (e.g. blogs, discussion groups, and reviews of health care providers) 37% of adults have accessed or contributed user-generated information. Given the growth and widespread adoption of user-generated content sites, this number is likely to grow as well.

One finding of particular interest relates to whether information found on the Internet actually caused harm to the person or someone they knew. Only 3% of respondents said this was so, while another 3% did not respond to the question or stated that they did not know. One common presumption is that bad information can and will cause harm in some cases. The fact that only 3% report actual harm resulting from information found on the Internet opens more questions. Does this mean that consumers are adequately filtering out “bad” information? As librarians, we may have a preconceived notion that consumers might lack skills to adequately evaluate health information, or they may be harmed if they find bad information and act on it. While there is no data to directly support these ideas, the report clearly indicates that a majority of people are making health-related decisions based on information found on the Internet, and that the number of people who have positive outcomes far outweigh those with negative experiences. This may be indirectly linked to another finding – that people use the Internet as an adjunct to professional medical advice and other traditional sources of health information.

The report concludes with commentary on social media and further changes that are likely to occur with mobile devices and demographic trends. Just as some people have ditched their landline phone and only carry a mobile phone (unthinkable just a few years ago), another trend may be to access the Internet on a small mobile device rather than the home desktop or even laptop. The authors of the report are expecting changes related to younger, wired generations, as noted here: “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.” Future studies will undoubtedly analyze these trends; stay tuned!

Resources mentioned in the article:
Ronda’s Migraine Page

The Social Life of Health Information

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