New Study Reveals the Power of the Diabetes Online Community


You may know the power of the diabetes online community, but does your doctor? Do experts understand what it really means when community members build relationships through social media in the #DOC? A new study might help.

The Journal of Diabetes Science and Technology published a study co-authored by Amy Tenderich of DiabetesMine called “What Are PWDs (People With Diabetes) Doing Online? A Netnographic Analysis”. This research examines the diabetes online landscape using tools to qualitatively assess the conversations happening all the time online.

Using the netnography method (studying social media) to understand the customs and cultures of online interaction, researchers parsed pieces of content from Facebook, Twitter, YouTube, Instagram, Tumblr, Pinterest, Reddit and Quora. The four researchers collecting data for this study included two college students currently living with type 1 diabetes (T1D).

In their look at diabetes social media, the research team identified six key themes that people with diabetes seemed to gravitate towards in their online sharing. They include:

  • humor
  • pride
  • diabetes technology
  • tips and tricks
  • community building
  • venting

According to the study, the steady stream of online content about living with diabetes has had a generally positive effect—and can even impact health outcomes.

Humor was a key part of the diabetes online community conversations—people are using the internet to share popular memes and videos that detail various humorous problems the community as a whole might face.

This study also identified pride as a theme online—many people stepping up to be outspoken about their condition, working to dispel stigmas and talking about the importance of sharing so that people with diabetes feel less alone. Researchers identified key hashtags like #showmeyourpump—where people with type 1 diabetes are encouraged to share pictures of themselves showcasing their insulin pumps. The hashtag was originally inspired by Sierra Sandison, Miss Idaho 2014 and Beyond Type 1 Global Ambassador Council Member.

What else are people with diabetes doing online? Following individuals or groups that share diabetes news, review the latest diabetes technology, and offer various tips and tricks. These include things like videos or comment threads on YouTube in which users might discuss how to insert a sensor for a continuous glucose monitor. Pinterest showed an especially high volume of infographics displaying necessary and well-presented facts pertaining to diabetes that might otherwise be overlooked or go unshared.

Two more themes identified by the authors were community building and venting—both of which hint at the critical mental health conversations happening online in the DOC. In the Beyond Type 1 community, you’ll find posts about both frustrations and connections. At their core, these are conversations that foster wellness and mental health, meeting unmet needs of people living with diabetes.

This idea of meeting unmet needs was one of the major takeaways from this research. “Patient social media appears to be filling critical gaps in the health care system for people with diabetes by providing much-needed real-world support and education anytime, anywhere,” they conclude.

The authors of this study suggest that healthcare providers and other industry players like device companies would benefit from paying attention to social media in order to better understand what is important to people with diabetes. People on social media, particularly in the T1D online community, are online right now sharing, connecting and influencing lifestyle choices and health decisions.

WRITTEN BY Beyond Type 1 Editorial Team, POSTED 12/06/18, UPDATED 08/04/23

This piece was authored collaboratively by the Beyond Type 1 Editorial Team. Members of that team include Editorial Manager Todd Boudreaux, Program Manager Mariana Gómez, Director of Brand Communications Dana Howe and Editorial Associate Jordan Dakin.