The importance of diabetes communities

From very early on when we explored the condition of diabetes and how it affects people, it became clear that there have always been many great online communities relating to all aspects of diabetes. We found these communities quite fascinating: How they help and support people, what different kinds of sub-groups form, how they changed over the years. xbird has taken part in some of these communities by taking part in discussions, learning from people and also giving back to these communities: For example by providing results of our diabetes survey or inviting people to our free movie screening at our office in Berlin of the inspiring documentary Bike Beyond.

In the early days of the internet, diabetes communities were hosted on standalone forum-board sites dedicated to diabetes (or medicine in general) or were part of diabetes information sites. Over the years, forums that were part of bigger diabetes organizations survived but many smaller standalone forums saw a drop in activity over the last ten years. Of course the need for the communities never vanished. In our estimation much of the activity moved to social media sites like facebook or reddit. This is an observation that is not only true for diabetes communities but for many kinds of online discussion boards.

No matter where this online social interaction happens, it brings fantastic benefits for people affected by diabetes.

1. People affected by diabetes support each other and show understanding. This is especially important for recently diagnosed people that struggle with all the changes that they are expected to make.
2. Knowledge is shared. And this knowledge can be of all levels: It can be more technical (eg how a certain activity influences blood sugar or how to use a certain blood glucose meter), it might be about a sugar-free alternative for a baking recipe or about motivational strategies, etc.
3. People can find information on a specific topic like veganism or sport. There are subforums or specialized groups where people can give each other support and provide knowledge that is relevant to some very specific struggles they are experiencing.

These benefits of online communities are applicable to other conditions as well and have been explored scientifically. In her paper from 2013 Social Media Use of Older Adults: A Mini-Review Leist gives a great overview of the scientific literature and discusses the clinical relevance by for example citing one study by Nahm et al. (2010) where they had patients after a hip-fracture use two different online tools. With both tools “The discussion board usage was significantly correlated with outcome gains.” Specifically on the topic of diabetes type 2 facebook groups, Partridge et al. in 2018 tried to steer the scientific exploration of these groups in the right direction because according to them previous methods were not sufficient to really analyze their strength and weaknesses regarding the patients’ outcome.

As beneficial as these online communities can be, all those papers also shed light on some main disadvantages: They need good moderation to not give space to harmful advice because only a tiny fraction of the participants in these groups are health care providers. Sadly sometimes these groups are misused by people trying to push their agenda or selling a new miracle drug. But to make it clear, most of these groups are well moderated and in our opinion the benefits outweigh the dangers. xbird will keep trying to support these online communities and guide people their way.

Leist, A. K. (2013). Social media use of older adults: a mini-review. Gerontology, 59(4), 378-384.

Nahm, E. S., Barker, B., Resnick, B., Covington, B., Magaziner, J., & Brennan, P. F. (2010). Effects of a social cognitive theory-based hip fracture prevention web site for older adults. Computers, informatics, nursing : CIN, 28(6), 371–379.

Partridge, S. R., Gallagher, P., Freeman, B., & Gallagher, R. (2018). Facebook groups for the management of chronic diseases. Journal of medical Internet research, 20(1), e21.

This project is co-financed via the European Regional Development Fund (ERDF)