Title:The Emerging Diabetes Online Community
VOLUME: 11 ISSUE: 4
Author(s):Marisa E. Hilliard, Kerri M. Sparling, Jeff Hitchcock, Tamara K. Oser and Korey K. Hood
Affiliation:Baylor College of Medicine, Department of Pediatrics, 1102 Bates Avenue, Suite 940, Houston, TX, USA.
Keywords:Advocacy, online communication, patient communication, social support, type 1 diabetes, type 2 diabetes.
Abstract: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.
Conclusion: 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.
