GBDOC: ITS HISTORY & ENDURING VALUE

Peer support and information-sharing among people who live with a medical condition is a natural, longstanding and widespread phenomenon. Diabetes lends itself particularly well to peer support, given that it is a condition as much as a disease, and that so much about its treatment is reliant on self-management. As a chronic, fickle and irreversible condition, Type One Diabetes is exceptionally well-suited to peer support, and the advent of the ultra-connectivity brought about by the internet and social media over the past 25 years has led to a sea change in how people living with the condition (or those caring for people with the condition) manage every aspect of it. 

Diabetes communities, and online diabetes chat are older than many might think: Local support groups were around years before the internet, and people with diabetes, or parents of children with diabetes, have been talking to each other online, sharing experiences and providing mutual support since the earliest days of social media. Facebook groups were formed, and these online forums gave people a chance to ask and answer questions. 

However, the GBDOC- Great Britain Online Diabetes Community- as a named and identifiable community was formed in 2012 by a man diagnosed with Type One in middle age who was an enthusiast of social media and was seeking ideas and support for living well with diabetes. He chose to base it on Twitter because of its open access and simplicity, and launched a weekly tweetchat, which grew in popularity as more and more discovered it. GBDOC had a website and social media presence and the community grew rapidly and was soon imitated in other countries. 

The founder conducted the tweetchats himself, using a dedicated Twitter account, and he became known to many and even organised two very successful national meet-ups. However, once the community had become established and to a good extent self-supporting, he stepped aside in mid-2017 and since then, GBDOC has been a more amorphous but very popular group, run entirely by community volunteers.

It is remarkable and significant that a group which has no formalised leadership, no income and which in many ways amounts to nothing more than a hashtag, has flourished and grown, with many regular and familiar users joining in who were not part of the community in those early days.

Two particular features of GBDOC are notable and far more apparent in the UK online community than in its counterparts in other countries; these have undoubtedly helped to build and sustain its success:Firstly the extent to which healthcare professionals and diabetes charities have taken their part, in a manner which has been overwhelmingly positive. Prominent and influential figures in diabetes care have become familiar and trusted voices, commendably aware of how much they can learn from those who live with the condition, and significant improvements in diabetes care over recent years have undoubtedly been driven by this informal alliance of healthcare professionals, diabetes charities and patients.

Secondly, the fact that most members of GBDOC have intuitively recognised that, however all-embracing their condition can sometimes feel, there is much more to their lives than diabetes, and so have become a community which interacts about far more than just their shared condition. Users engage with each other as people first and foremost, not as patients, and this has driven the appetite among users to become friends and to meet in the real world as well as the online one. During the Covid-19 Pandemic of 2020-21, spin-offs like online quizzes, a community fantasy football league and an online showcase for artistic talent have been popular and beneficial to many.

The thing about a diabetes community is that the very randomness of the condition means that there is nothing that unifies those with diabetes except diabetes itself: this is the basis for a diverse and supportive community, and it seems certain that for as long as there is diabetes, there will be a need and an appetite for an online community. 

Adrian Long (living with Type One Diabetes since 1997)