Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook
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Several disease-specific information exchanges now exist on Facebook and other online social networking sites. These new sources of knowledge, support, and engagement have become important for patients living with chronic disease, yet the quality and content of the information provided in these digital arenas are poorly understood.
To qualitatively evaluate the content of communication in Facebook communities dedicated to diabetes.
We identified the 15 largest Facebook groups focused on diabetes management. For each group, we downloaded the 15 most recent “wall posts” and the 15 most recent discussion topics from the 10 largest groups.
Four hundred eighty unique users were identified in a series of 690 comments from wall posts and discussion topics.
Posts were abstracted and aggregated into a database. Two investigators evaluated the posts, developed a thematic coding scheme, and applied codes to the data.
Patients with diabetes, family members, and their friends use Facebook to share personal clinical information, to request disease-specific guidance and feedback, and to receive emotional support. Approximately two-thirds of posts included unsolicited sharing of diabetes management strategies, over 13% of posts provided specific feedback to information requested by other users, and almost 29% of posts featured an effort by the poster to provide emotional support to others as members of a community. Approximately 27% of posts featured some type of promotional activity, generally presented as testimonials advertising non-FDA approved, “natural” products. Clinically inaccurate recommendations were infrequent, but were usually associated with promotion of a specific product or service. Thirteen percent of posts contained requests for personal information from Facebook participants.
Facebook provides a forum for reporting personal experiences, asking questions, and receiving direct feedback for people living with diabetes. However, promotional activity and personal data collection are also common, with no accountability or checks for authenticity.
KEY WORDSsocial networks online social media information seeking behavior Facebook diabetes disease management
All authors made significant contributions to the study. The authors retained independent and complete control over the design and implementation of the study as well as the analyses and writing of the manuscript.
This work is supported by a research grant from CVS Caremark and a career development award from the National Heart, Lung and Blood Institute (K23HL090505-01) for Dr. Shrank. The funders played no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript.
Conflict of interest
- 1.Fox S JS. The social life of health information: Americans’ pursuit of health takes place within a widening network of both online and offline sources. 2009. http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information.aspx Accessed 16 Sep 2010.
- 2.Elkin N. How America searches: Health and Wellness January 2008. iCrossing.http://www.icrossing.com/articles/How%20America%20Searches%20-%20Health%20and%20Wellness.pdf. Accessed 16 Sep 2010
- 9.Press TA. Another Redesign For Facebook On 6th Birthday. National Public Radio. February 5, 2010.Google Scholar
- 10.Shapiro J. Patients Turn To Online Community For Help Healing. National Public Radio. November 16, 2009.Google Scholar
- 11.Sarasohn-Kahn J. The Wisdom of Patients: Health Care Meets Online Social Media Ihealth reports. 2008. http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=133631. Accessed 16 Sep 2010.
- 13.Microsoft Office Access 2007 [computer program]: Microsoft Corporation; 2006.Google Scholar
- 17.Promotion of FDA-regulated medical products using the internet and social media tools, Part 15 public hearing, Thursday, November 12, 2009. US Department of Health and Human Services, Food and Drug Administration. Vol 2009.Google Scholar
- 18.Olsen C. Year in Review: FDA Spotlights Social Media, But No Guidelines Yet. The Pink Sheet January 11, 2010 2010:26–27.Google Scholar