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The Emerging Diabetes Online Community
Marisa E. Hilliard, Kerri M. Sparling, Jeff Hitchcock, Tamara K. Oser, and Korey K. Hood
Baylor College of Medicine, Department of Pediatrics. Houston, Texas, USA, 77030; SixUntilMe.com. East Greenwich, Rhode Island, USA, 02818; Children with Diabetes. West Chester, Ohio, USA, 45069; Pennsylvania State University College of Medicine, Department of Family and Children with Diabetes. West Chester, Stanford University School of Medicine, Department of Pediatrics. Palo Alto, California, USA, 94305.
Background: Diabetes self-management is complex and demanding, and isolation and burnout are
common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes.
Methods: Research and online content related to diabetes online activity is reviewed, and DOC writing excerpts are used to illustrate key themes. Guidelines for meaningful participation in DOC activities for people with diabetes, families, health care providers, and industry are provided.
Results: Common themes around DOC participation include peer support, advocacy, self-expression, seeking and sharing diabetes information, improving approaches to diabetes data management, and humor. Potential risks include access to misinformation and threats to individuals’ privacy, though there are limited data on negative outcomes resulting from such activities. Likewise, few data are available regarding the impact of DOC involvement on glycemic outcomes, but initial research suggests a positive impact on emotional experiences, attitudes toward diabetes, and engagement in diabetes management behaviors.
Conclusions: The range of DOC participants, activities, and platforms is growing rapidly. The Internet provides opportunities to strengthen communication and support among individuals with diabetes, their families, health care providers, the health care industry, policy makers, and the general public. Research is needed to investigate the impact of DOC participation on self-management, quality of life, and glycemic control, and to design and evaluate strategies to maximize its positive impact.