Increased access to the internet and social media has allowed individuals across the globe to connect in ways that weren’t possible decades ago. Active, vibrant communities have formed that engage users from a variety of backgrounds in information sharing and peer support, often around a specific topic. But do these bustling online communities offer real health benefits?
To help answer this question, I recently led a study to see what the evidence showed. In collaboration with an interdisciplinary team of researchers, people living with diabetes and parents to children with diabetes, we mapped the existing research focused on “organic” diabetes online communities (DOC). Organic DOCs were defined as online spaces that are developed by people living with or affected by diabetes (and not by a professional organization, healthcare provider or researcher).
The study, "State of the Science: A Scoping Review and Gap Analysis of Diabetes Online Communities," was recently published in the Journal of Diabetes Science and Technology. Over 14,000 articles were screened and 47 were included in the final analysis.
Overall, the data showed that DOCs have a lot to offer a person with diabetes. Here are some of the key findings:
Health Outcomes Related to DOC Use
- DOC use was associated with neutral or lower A1C
- Psychosocial health is positively associated with DOC use by way of shared experience, social support and empowerment
- DOC users are reporting behavior change related to peer support by increasing self-care activities, and feeling motivated and accountable
- DOC users want healthcare providers, such as diabetes educators, to be aware of DOCs and to enhance their understanding of diabetes and the value of the community
- HCPs are not always supportive of DOC use, though when they are, people with diabetes are more likely to use DOCs
- Overall, the DOC is helpful most of the time with very little harm reported
Misinformation in DOCs is uncommon, occurring 0-9% of the time
But as with any tool and individual patient needs, there are always considerations to be aware of.
DOC Use Concerns to be Aware of
- Misinformation in DOCs is uncommon, occurring 0-9% of the time. When misinformation did occur, it was mild and considered not likely to result in untoward effects. (Importantly, information within DOCs may be different from information found using search engines).
- Though DOCs are being used to gain information about risky behaviors and ask about acute concerns, which could be problematic for some populations (such as diabulimia), and helpful in others who don’t want to be lectured by their healthcare provider about not engaging in risky behavior.
- Infighting between people living with type 1 diabetes and type 2 diabetes is sometimes present and likely rooted in misconceptions and stigma.
- Among parents of children with diabetes, DOC use was associated with hypoglycemia fear and stress, though unclear if it led to DOC use or is because of DOC use. Social network analysis showed that parents of children with diabetes may struggle more in comparison to other DOC users.
- Privacy in the context of health information sharing online varied. Some shared openly and forgot about the public nature of the posts. Observing, or lurking, may be one way that people with diabetes can feel supported while maintaining their own privacy.
If you take one thing away from this study, remember that online peer support communities can be an effective tool in managing the psychological burden of diabetes. And as social media continues to become engrained in our daily lives, this highly accessible resource, if used responsibly, can benefit people with diabetes in the clinical setting.
Additional resources on this topic can be found on AADE’s peer support resource page at DiabetesEducator.org/PeerSupport. The research team included Heather Walker, Ashley Ng, Sarah Wawrzynski, Sean Oser, Deborah Greenwood, Perry Gee and Tamara Oser.
This research was partially supported by the AADE Education and Research Foundation.